Sunday, 24 September 2017

Liraglutide: Information and Concerns - The POMC Series

Hello again everybody, 
Stock image from

I would just like to apologise for the ridiculously late post, there's been so much going on this week it's been mad. I had a second RVI appointment within a month which is very rare for me as I usually get seen twice a year, this was to discuss the drug that I'll be talking about today. It's gotten around to that time of the month again and I'm not going to lie I'm in so much pain I can barely get out of bed and it sucks, other than that I have a skin condition called Acanthosis Nigricans (AN for short) which you only get if you're insulin resistant, the AN for me is on my neck and my upper abdomen directly below my breasts and the skin has dried out and split and resulted in an infection. University is coming up and I've been stationary shopping and preparing myself so, like I say, it's been pretty hectic. 
However, I am back now and today's post will be looking at a possible "treatment" for need of a better word, for POMC, now it's important to note that this drug is absolutely not a cure or a treatment for POMC but I couldn't think of a better word of it at the moment, management I suppose would be a better description actually, but for now I shall get into the post. 

When I was in York taking the call from Professor Farooqi she suggested that because of my rapid weight gain and lifestyle and diet she was concerned about me as a 5 stone weight gain in 9 months is really not good by anybody's standards, she suggested that while I am waiting to be eligible for the Setmelanotide trials (still not eligible at the moment and unsure of when this will be) I should try  another drug called Liraglutide. To be honest her tone of voice when she said "have you ever been offered Liraglutide before?" wasn't something that filled me with hope. You know when someone says something and you know that they know there is a reason you've never been told something like that? Yeah, that's the feeling I got. 
She told me about it, explained that it seems to have worked for people with POMC before and it might be worth giving it a go, obviously I got my hopes right up once again (5th time lucky eh?) and I was so excited to bring my RVI appointment forward to get right on this drug. Before I rushed into anything I decided I would do a bit of research of my own so I wasn't going into the appointment without knowledge, here is what I found. 

Liraglutide also known as Saxenda or Victoza is a drug that was initially developed to be used by those with moderate to severe diabetes and is in the same class as a drug named Byetta, it is derivative of a hormone called GLP-1 which basically stimulates insulin secretion and expands insulin making beta cells in the pancreas. In the beginning the main point of the drug was to drastically cut blood sugar levels and reduce weight in people with diabetes, however after some development the drug is now able to "work on" the MC4R reception, usually faulty in those with POMC which control weight gain and regulation. It was only prescribed for type 2 diabetes until this point, it has since been prescribed to people with POMC and positive results have been seen. Find more information about the drug in general here. The drug itself is very new and a lot of doctors I have spoken t in the last several weeks know very little about it other than the basics. 

Now, obviously I am being given this for weight management as I am not diabetic but I am insulin resistant, those being given this drug for diabetes are given a "normal" dose of the drug usually 1.8mg however people using it purely for weight management are given a DOUBLE dose. Right now, in my head the drug sounds amazing! i can't wait to try it and I'm 100% sure it'll do me some good. However, I also found online that if you have previously been on Metformin, another drug to regulate insulin, and have been intolerant of that, which I was while taking it, you may have an intolerance to Liraglutide, something which dampened my hopes slightly. I was still willing to try the drug though, inroder for the drug to be administered it is one injection each day in the upper arm, thigh or lower abdomen. I would also not be allowed to drink alcohol whatsoever as Liraglutide and alcohol mixed has serious side effects such as increased heartbeat and death. 

Here is where the concerns come in. As I was researching about the drug, as you do, I searched possible side effects and I was so shocked, I will write a list of the possible side effects of Liraglutide in a moment however, the things that caught my eye first is that the FDA, the organisation that approves or disproves drugs has put a back box warning on this drug, meaning that the side effects can in reality cause extremely serious conditions or death resulting from the fuse of the drug. This scared me right away, for obvious reasons, nobody wants to think that a drug that could help them might kill them or cause serious side effects, but because I've taken drugs before that have said side effects could be fatal e.g. Metronidazole antibiotic with alcohol can be fatal, I thought that maybe it was an overreaction. Here is a full list of side effects of Liraglutide:
  • Nausea
  • Vomiting
  • Diarrhoea 
  • Constipation
  • Upper respiratory tract infection
  •  Intestinal and digestive tract problems
  • Headaches/migraines
  • Sinusitis
  • Dizziness
  • Back pain
  • Flu-like symptoms
  • Injection site reactions
  • Bloating
  • Loss of appetite
  • Fatigue
These shown above are common side effects. Less common side effects include:
  • Shortness of breath
  • Weight gain
  • Horse voice
  • Lump in the throat
  • Throat swelling
  • Easy bruising or bleeding
  • Infections
  • Increased thirst
  • Palpitations/Arrhythmia
  • Less frequent urination
The final side effects as listed below are the most serious kind of effects resulting from the use of Liraglutide:
  • Pancreatitis
  • Pancreatic cancer
  • Thyroid cancer
  • Kidney or liver problems resulting in the need for dialysis
  • Death
Up until recently thyroid cancer had only been reported in rats, however humans are now presenting with it more frequently than before, I have decided that I am not going to include any statistics about the drug i.e. how many people have been diagnosed with what side effect because honestly there is so much contradicting evidence online, one report said 19% of patients presented with pancreatic cancer, another said only 1-3% of patients presented some kind of cancer after treatment. One report said people using it for weight loss have lost up to 10 stone and another said the best weight loss seen on Saxenda was only 19lbs in 56 weeks. For me the information is far too jumbled, mixed and contradictory, so until I can properly find out about the real statistics I will not post anything that may not be accurate, up-to-date or correct. It is also important to note that earlier I mentioned that those using Saxenda for weight loss purposes will receive a double dose, these side effects are laid out for those receiving a single dose, therefore it is to be assumed that side effects are more likely to occur when taking double dose of 3mg (according to my doctor at the RVI).

It is pretty obvious to me that this drug is extremely serious and is nothing to be taken lightly, the side effects could end up killing somebody taking it, I have a history of cancer in my family and I'm honestly not sure what to do, if I take it an react badly how many doses before I develop a cancer? Pancreatitis? How long before you see results? Would I need to take a leaf of absence from university? I of I wouldn't be able to work or afford the costs of getting to my hospital appointments as I cannot rely on family to drive me. I'm scared for my health as I cannot afford to gain anymore weight, I'm scared I'll never get to spend my life with Simon and my family, enjoy my time with friends and work in a job I love. I'm scared that my only management option at the moment could be the thing that kills me ultimately. I don't know if I should risk it or not and these are the times I want someone to tell me what to do. I've watched Simon cry because he's scared of losing me to the drug, my condition and such, I've watched my Mam and Nana cry because they can't help me. My head is in bits everyday about this. 

I don't know what to do at the moment but I promised at the beginning of this blog I would keep you all up to date and be as honest as possible about my feelings and how any treatments affect me, I hope you keep reading and please if you get offered this drug for whatever reason think very carefully before jumping right in. 
Thanks for reading and bye for now. 

Sunday, 17 September 2017

Exercise tips and Tricks - The POMC Series

Hello everybody!

Happy Sunday once again and I hope you've had an amazing week. Things have been absolutely maid here as Simon started back at University on Monday and I'll be getting ready to carry out more buddy duties this week, hospital appointment on Monday and dentist on Wednesday, feels like things are non-stop to be honest. Well, it means I'm not bored ha!
Anyway, I know I have been pretty delayed in posting recently but what with York and uni I've had a few post scheduling mishaps, mainly because one post that should be coming soon about a possible POMC "treatment" for want of a better word, will mean I'll need to do a massive amount of research on it and a lot of the information online I'm finding quite inaccessible so I'm relying on my doctor at the RVI to tell me a little bit more tomorrow. Obviously there's a post going up today about exercise tips and tricks that I've learned over the years, this one will include information on the best kinds of exercise I've found really helpful and what you can do to make the exercising process easier if you've got a genetic obesity condition. So, without further ado lets get on with it!

Exercising for anybody who is obese can be a difficult and emotional thing, I know a fair few obese people who simply don't want to exercise partly because they are scared of failing in terms of weight loss and partly because if they were to go to some local gyms in my area they are likely to get abuse shouted at them, which I always find infuriating... Why discourage somebody from going to the gym to improve their health when that is what a gym is for?! However, for people with a genetic obesity disease often they can put far too much pressure on themselves to work harder and lose the weight which as I've mentioned in many previous posts, with certain genetic obesity conditions it doesn't matter how much exercise you do the weight just won't drop off like the average person, so this can result in these people injuring themselves or putting too much stress on their bodies. I mean I'm not an exception I've spent hours doing stupid exercises trying to 'drop the belly fat' and lose 4 stones in a month' with crunches and such but it never works. 

Eventually when I got to 18 I realised that because of my disabilities the exercises that I was trying to do were harming my body and making me worser overall, I was trying to exercise to lose the weight rather than to be healthy and that was when I knew I had to change my mindset. The thing is if you exercise to lose weight you're not looking at the big picture, you're only looking at the outside and surface of your body, if you start to think that the reason you're exercising is to get healthier, to be more flexible and fit then you can open your mind to different exercise and routines that are out there and develop something particularly appropriate for you and your body. Getting fit on the inside might help the outside but in all honestly being overweight doesn't mean you're unhealthy, I have friends who cannot walk up the stairs without becoming breathless that are smaller than average sizes and have no medical problems like asthma, then I have obese friends who can walk a mile easily and not break a big sweat. 

I'm going to make a list now of things that I did once I had a change in outlook towards exercise, hopefully it will give some insight into how I managed to develop and exercise routine that is appropriate for me. 
  • I wrote down what I was looking for with exercise, I wasn't looking to lose lots of weight just to become fitter and healthier.
  • I did a lot of research on what kinds of exercises fit the criteria of what I wanted. Happily I found that Yoga was something that would improve my flexibility, muscle tone and wasn't too strenuous for my body. 
  • I took up Yoga and took classes once every week, I started to see a small improvement in areas such as better sleep, my body didn't feel as tense which was a much needed improvement. Yoga has now become part of my daily routine as have some particular stretches; I don't want to do too much exercise as it is extremely painful for my legs and back when I over do it but I do enough to maintain the level of health I have now so my disabilities don't get any worse. 
  • I made small lifestyle changes, years ago, rather than parking in the closest bays to shops I would park as far away as I could so i would have to walk father which for a time genuinely did help me, however since my weight gain has not levelled out and I have put more on I am not able to do that anymore, walking in limited for me however I would highly recumbent it for those of you who are able to. 
  • Swimming was also a wonderful exercise for me as it tightened up muscles in my body around the stomach area making me feel better about myself, however swimming is also great as you can use it to relax your muscles and just gently bob along! No exercise has to be very exerting as I mentioned. 
  • Due to a faulty hypothalamus I overheat and dehydrate extremely quickly so I always make sure I am hydrated and I ensure I take all medication with me such as my inhalers, my pain medication and I make sure I either exercise with someone else or I take my phone so if anything goes wrong I have a way of contacting people to get help. 
I would also recommend that before you exercise, particularly if you have a genetic obesity disorder that you go to your doctor and find out if there is any support from professionals or practitioners who could help you develop your own exercise routine, sometimes if you do it alone you may be a little over enthusiastic and end up damaging yourself. Always remember as well when you are trying to get yourself into exercise, for whatever reason, you won't see results straight away. A cliché as it sounds Rome wasn't built in a day and the fact that you are trying at all is an achievement you should be proud of.
Thank you all for reading and hopefully get the next post out within the next few days!

Have a wonderful Sunday, bye for now!

Thursday, 14 September 2017

My Diet with POMC - The POMC Series

Hello there everybody!

How is everybody today? Hope all is well. Today's post in The POMC Series is all about my diet and how I cope with the hyperphagia caused by POMC deficiency disorder. I've always been very quiet and conscious of my diet but recently I've realised that my diet is actually a lot better than I thought. This post is not meaning to be bragging rights at all, like "oh my diet is so much better than yours" because the fact is it's not better than anybody's my diet is mine because this works well for me, I'm not always excessively hungry every second of the day nor do I skip or miss meals. 
I've heard from discussions recently that some people with POMC tend to keep an extremely low calorie diet and that seems to be going alright for some people and kudos to you if you've found a diet that seems to fit you and your body or needs because that's not an easy thing to do whatsoever, I mean take your average person, you try and find a diet that is satisfying, healthy and gives you all the nutrients you need at 1,000 calories or even much less in some circumstances... it's an exceptionally difficult thing to do, so well done! 
This post is also not going to be a complete run down of every single tiny thing I eat and drink each day because... well that would just be boring for me to write and probably for you to read, however if you would like me to do something like that in the future contact me privately and I shall look into putting something like that together to post. 

Anyway, I shall get on with the post right now. Overall, I've been to countless dieticians, exercise specialists and such, I've spoken to at least 5 different endocrine specialists who deal with my POMC from the RVI, my main doctors and nurses form Cambridge and each doctor and nurse has given me a different answer (with obvious similarities in the case of the specialists) to the question: "Which diet is best for me?"
Over the years I've tried many diets from carb-free, low fat, vegetarian, vegan and gluten free but none worked. Obviously, a dietician will tell me low fat, low sugar, low everything pretty much with a very low calorie intake, however doctors have told me (those from Cambridge and the RVI) that if I can maintain an exercise regimen with roughly equal output to my intake of calories and energy I should be able to manage my weight slightly easier, although it'll still have little effect on weight gain as I've been told with POMC it's extremely difficult to lose and much too easy to gain weight as the body retains as much energy from food as possible. Therefore from all the information I've gathered I've managed to set up a diet of roughly 1,200 calories per day, I've also recently been made aware that a high protein diet, the right kind of protein that is, can help in some circumstances with feeling hungry so often, I was recommended that snacks like nuts and Skyr yoghurt which is high in protein and very low in fat are snacks that may help. 

However, in terms of breakfasts I am, as I've said before unable to eat bread, it's just something about the texture and taste that makes me feel sick so I don't eat much of that whatsoever. I also struggle to eat on a morning at the best of times so breakfasts for me tent to be things such as homemade fruit smoothies and cereals like those high in fibre such as bran and oaty cereals, this allows me to get my fibre as well as getting fruit and natural sugars, my grandfather is friends with a man who often gives us fresh fruit and veg that he grows which is much nicer than supermarket produce, so it's very much homegrown stuff in the smoothies, skimmed or almond milk that kind of thing. Very tasty and surprisingly filling. If you make a larger one as well you could always take that with you to school, uni or work and make it last throughout the day. Stops me snacking at least. 
Again lunches tend to be kept very low in fat, small homemade pasta pots, soups, rice boxes usually keep me going, I love vegetables so grilled veg couscous is one of my favourite things, I usually have some kind of desert to go along with it and I enjoy making fruit boxes so I'll just make a mini fruit salad with different types of fruit or a small pot of mixed seeds and low fat vegan chocolate mixed in, although that one is a treat as I love seeds and chocolate!
Snacks tend to include a lot of nuts and seeds as I mentioned, sometimes I'll just buy a bag of carrots and snack on those until I'm satisfied, more yoghurt or crunching ice cubes are pretty much all I do for snacks.
Dinners for me are often much more protein based with fish playing a big part, definitely a fan of omega 3 over here ha! I enjoy experimenting with spices as does Simon so I'm quite happy to try different kinds of meats, vegetables and so on, usually dinner times are just a concoction of things we have thrown together (I make a mean shredded chicken salad as well!). It's really important for me that I keep an extremely low fat, low sugar and salt diet, protein is higher on my priority list than anything else, usually it's meat I crave anyway but honestly I do manage to stay under 1100 calories almost all of the time. Sometimes I go out to eat but that I on occasion every now and then, never a regular occurrence unless it needs to be as I tend to make my own lunches so I know exactly what is going into by body. When I do go out I love things like Japanese food so Nudo and YO! Sushi are two of my favourites and a lot of things on YO! Sushi also have the calories and nutritional value next to them on the menu so you know exactly what you can get and how it'll all add up at the end of the night. Most of the time I avoid things that are greasy or fast food because I know it'll make me feel sick as well as not do anything for my weight gain. 
in terms of drinks I only drink fizzy drinks they are now a no-go, I mainly rink water and flavoured water, always still. 

I've heard people many times over the years claim that food is the enemy with POMC warriors and that's all well and good if that is how you like to view it but in my personal opinion that's not how I ever want to view my condition. I see my body as doing me a favour... go with me for a sec. See, my body stores as much energy as it can because it doesn't work properly, therefore it's wires are crossed and thinks that I'm going to starve if I don't eat or get hungry a lot of the time (now I know this is the incorrect way of thinking about it but it helps me understand myself a bit better). So, because my body thinks it is helping me by storing all the energy and such from food it's up to me to control my own diet and exercise in order to guide my body in the right direction, almost like helping a child who has gotten something a bit wrong and needs some help, if you understand what I'm saying? That was very long winded ha. 

Once again, I thank everybody for reading this post and coming back to my blog, I hope if anybody is reading this with POMC or a child with POMC/LEPR or Prader Willi Syndrome recently diagnosed I hope I've helped a little.

Tuesday, 12 September 2017

Getting and Coping with a Diagnosis - The POMC Series

Good day everybody!

How are you all doing today? Very good I hope. It's been a crazy hectic week what with York and a few other things going on at home, getting ready for university is so exciting and I've already got my backpack ready to go! Nothing like enthusiasm, eh? Anyway, I've been working on today's post for a while and I've actually had most of it written up for quite a few days now but it's something I've been meaning to discuss for some time; today I want to talk about getting and coping with a diagnosis of POMC or any other genetic obesity disease such as Prader-Willi or Leptin Receptor deficiency. 
When I was diagnosed I was so young that I honestly didn't understand what was wrong and to be honest didn't truly understand it up until this year when I actually started to look deeply into my condition; there was very little support around at that time as doctors knew less about it then than they do now, so hopefully what I'm writing now will eventually get to someone diagnosed with a genetic obesity condition and help them.
Image from Google

Getting a Diagnosis
Right, first of all I would like to talk about actually getting your diagnosis, when you first suspect something may be wrong genetically in terms of obesity, probably from recognising signs and symptoms (find a small list of them here INSERT PREV BLOG POST) you should speak to your GP about your concerns about your health. There is a good possibility that you'll be met with doubt and scrutiny from many doctors you speak to, particularly primary care doctors such as GPs as there is a huge stigma attached to obesity. One idea particularly is that obese people are unlikely to take responsibility for their own health problems, this is an incredibly ridiculous idea as although there may be some people who prefer to blame others' for their weight, there are also people who can take responsibility for their health and others who have no responsibility to take as it is no fault of their own. One way that you can help yourself here is by printing off a list of symptoms and signs that you are experiencing and take that to your GPs surgery, book a double appointment with an actually doctor as this gives you more time to explain your circumstances. If you're struggling to get support from your doctor the first time, ask for a second opinion if you are convinced there is an underlying issue. 
If you are determined and have an understanding doctor, or one who likes to take interest in unusual conditions, you may be given referrals for genetic testing, these tests can be intensive and arduous and very frustrating at times, most of mine consisted of blood tests, ECGs, I actually had treadmill tests, some kind of sleep test where I had a space helmet like contraption over my head whilst I slept and many others. Often these tests can be frightening especially if you're a child and don't fully understand your situation, they can be emotionally fraught times during and waiting for test results but if you speak to the team dealing with the tests it should be possible to arrange some sort of counselling session, as least my hospital did that for me when I was scared. In times like these it's also important to keep a close network of good friends and family around so you can talk to them when you need. 

Coping with a Diagnosis
If you are unfortunate enough to be diagnosed with a genetic obesity disease then I truly feel for you, the first thing that you need to know is that you are absolutely not alone, as much as you may feel it at the beginning. You may be angry and try to blame whoever you can for this happening but honestly, don't. In situations like this absolutely nothing can be helped as much as it may hurt, one of the best things about being diagnosed at a time like this is that currently there are trials going on to test a particular drug to see if that can help, there is more knowledge and more doctors researching it then ever before and there are more people diagnosed. Personally, knowing what I do now about the condition I would recommend doing several things once you are diagnosed, these being:
  • Learn - find out as much as you possible can about the condition you have, ask doctors, nurses and specialists what is involved with your condition, how does it affect people, learn about what foods are best for you, how you can exercise, how you can try to maintain your weight, learn as much as you possibly can about your condition as it will help in the future.
  • Take Note - take notes on how your body is progressing, is there anything that can make you worse e.g. do you find it hard to say no? Little self-control? Often times pressure and convenience can lead you to eat badly, if your friend tried to twist your arm for fast food, you must find out what your triggers are, how you can stop yourself eating badly and take notes on how your body is developing. Are you gaining, losing or maintaining your weight? How are your usual body functions e.g. how is your hunger, how are your menstrual cycles? Learn about yourself. 
  • Teach - it's essential that you teach the people around you exactly what going on with you the best you can, build up an informed and understanding support network around you as these people will be your biggest strength in your darkest of days. 
  • Get Support - as I mentioned earlier there are now a number of organisations and nonprofit organisations that have been established in recent years that can give or can point you in the direction of support. Facebook groups, blogs such as this, NORD, EURODIS, Orphan Drug Act, Genetic Alliance, Global Genes and so many more organisations can help and support you. Other groups such as Facebook groups are often much more for emotional support and helping you get in touch with doctors. 
  • Diet Changes - It's essential that you make some changes to your diet when you're diagnosed with a genetic obesity disease, especially if you've not had a great diet up until this point. Again, it's all in the learning, get yourself to a specialist dietician, preferably referred from your specialist doctor rather than a GP as GPs and your "average" doctors do not tend to read notes and it can make you feel as if you're banging your head against a brick wall. It'll take time but try and find a diet that includes all or a lot of the vitamins and nutrients your body needs while getting in the foods you love, get support from family and friends, do not let them push you into something you know is not good for you. Make better decisions when going out for food and try to be aware of your exercise as well as this can help a lot in making you feel better in yourself and in *some circumstances can help maintain weight. 
That ladies and gents is all of the information that I can give you from my little noggin. I really hope I've been able to help but the one piece of advice I can give you is this: give yourself a break, none of this is your fault and know you have a diagnosis and the knowledge of what exactly is going on in your body you can try to make some good changes and Rome wasn't built in a day remember. 
Thank you all for reading. Have a fab day! 

Sunday, 10 September 2017

Life Update and Worries - The POMC Series

Morning all!

Well, it's been an eventful few days and a very busy week! This post is going to be a quick update and a talk about a few worries I have at the moment. Me and Simon got back from York on Friday night and went to see out best friends Annie and Aidan before we went home,it was lovely to see them after a few days and catching up is always fab, Aidan and Simon are like a couple of kids laughing away at youtube videos they've been wanting to show each other over the last week; honestly, I love seeing Simon and my friends get on, makes me extra happy. 
Anyway, last time I posted an update I said I would be taking part in an interview with Sophie Dishman of University of Sunderland which I did Monday passed and honestly she was absolutely fantastic, such a professional and so kind, I'll be posting a link to the interview and talking a little more about that when I post later next week so please keep an eye out. After that myself and Simon, Annie and Aidan all went to Sunderland and Darlington to grab lunch and just relax together for a while, nothing special just a chilled out relaxed day. 
Flowers Simon bought me <3

On Wednesday me and Simon got to head down to York after a doctors appointment and it was SO hectic trying to get everything together it was really mad! We ended up forgetting our inhalers, both myself and Simon are Asthmatic so it was a bad move there but I just prayed that nothing would happen, however that's not our luck really... Anywho, we stayed in a B&B called The Willows near York and just passed Harrogate and oh my it was so lovely! The proprietor was so kind and welcoming and totally understanding about my dietary needs, he was accommodating and an all-round great man, the room we stayed in was lovely, very private and comfortable with beautiful views to his fishing pond. 
On the first night we decided we would get tea somewhere and decided on a Chinese restaurant called Sweet Basil, the staff were lovely but (and here comes the usual unexpected medical problem) Simon ordered chicken chow mien which didn't include any information on what it contained just how much the dish would be so Simon thought he would be fine, he is severely allergic to nuts and somehow there must have been traces of nuts in the food as he swelled up like a balloon and couldn't breathe so we had to get him to York hospital really quickly, he was given a strong inhaler and steroids and was thankfully alright after a few hours. Still I was out of my mind panicking... no epipen no inhaler, no idea how to get to the hospital and my husband-to-be haven an allergic reaction in the passenger seat! God that was scary. 
Lunch and cocktails!

After the ordeal of the night before we decided would go into York and headed straight for The Shambles and The Shop That Must Not Be Named, a Harry Potter themed shop full of awesome stuff, I managed to get friends and family some gifts like notebooks, fudge, decorative lights, drink flasks and stuff so everyone was catered for thankfully. We headed into other shops and had a general look around which was lovely to be in an area other than Durham or Newcastle; we started to get hungry after a few hours of shopping, albeit it took me around 3 hours to walk round the shambles as I needed frequent breaks. Simon found a restaurant called divine which looked as though it had food that both of us could eat which i was grateful for considering I'm not sure Chinese was the best idea for the night before. We got pasta and risotto which was very nice and filling and Simon bought us a few cocktails to be going on with. It's important to note that earlier in the week I had been discussing the possibility of getting on to a Setmelanotide trial for a drug that aims to treat those with genetic obesity diseases, up until this point I had not been eligible and was waiting for more information via phone call that day from my main Doctor in Cambridge. So, obviously I was quite stressed and the few cocktails I had definitely helped, and they were yummy. 
Stunning Cathederal

Anyway I was meant to get the call from Dr Farooqi at 12:30 but she had been called into a meeting and I didn't receive it until 4pm, the same time we were due to be going to an escape room. I found out from my doctor that drug companies are refusing the trial for those with one genetic fault as it is deemed more helpful for those with 2 genetic defaults, however she did discuss with me the possibility of another "treatment" called Liraglutide, a regular injection into the fatty part of the stomach or thigh. Only issue is this drug causes Thyroid cancer in animals, pancreatic cancer, pancreatitis and a whole host of other problems in people... so now I'm panicking and hopping to get more information out of my RVI doctors as soon as possible, I want a treatment and my doctor says I need one as soon as possible but at what cost? Is getting an immediate treatment worth possibly risking my life? I have no idea but I'm scared and confused at the moment and will be writing another post about Liraglutide as soon as i know more info. 
After the call we ended up in Gr8 Escape York and it was amazing!!! We had lots of clues to figure out and had to escape to room to get our spy school diploma, unfortunately we are both bad at maths and the people monitoring us actually gave us the answers to a few clues haha! Still, we failed but honestly, it's the best experience ever!! I loved it as did Simon and can't wait to take out friends there! 

The next day was home time but we thought we would go into York city centre again and do a few things we never got to, we managed to get into a few shops which we never had the day before, Travelling Man where I bought a book called 'My Lesbian Experience with Loneliness" (awesome book by the way!), a Model shop so Simon could get some trains and things, and we went into the York dungeons which was hilarious, scary and utterly fascinating all in one! Overall it was a fab trip and we have made some wonderful memories,  got a lot of things to think about and will definitely be returning. 

Other than our trip to York I have become involved with the Sunderland University SU Buddies Scheme and and extremely excited about that, I go back the week of the 25th and my amazing best friend has been accepted into uni for her dream course which I'm so proud and excited for. I really can't wait for university to start but in the meantime I'mm be blogging more, reading up on course material, chilling and just doing me! 

I hope you all have had some amazing days this week as well! Thank you for reading and keep sharing ladies and gents! 

Saturday, 9 September 2017

Making the Most of University!

Hi all!

Today's post is something that I've only recently gotten into to be honest, I'm a firm believe that you must make the most of every experience in life and make sure you keep a positive attitude and because Freshers week is so close I thought a post on how to make the most of your University experience might be good for some. 
I'm going to speak from experience here so my situation was slightly different from others, as is everybody's experience; so, when I started uni back in September last year I was so nervous and anxious, mainly because I had 0 self esteem or self confidence. I was a wreck pretty much all year, jittery and scared, I only made 1 friend the whole year (who is awesome btw) but wanted to approach so many other people I was just too anxious and obviously anxiety got the better of me. It's only since I have truly embraced who I am and what I can do that has given me a kick up the backside and made me realise I am worth of friendship, love and a hella good time at uni!
Image from Google

Everybody will be nervous starting uni for different reasons whether it's the fact that they need a little extra support and don't feel they know or can ask for it, they're moving out for the first time, some people will feel anxious because of how the look (like I did) and not want to approach anyone. Whatever your reason for being anxious or nervous you've got to remember while you're probably feeling alone and like you're the only one who feels that way you are literally surrounded by hundreds or thousands of other people who are feeling the same wishing someone would talk to them first. Be that person. There are loads of ways you can make the most of your time at university and I shall list them below right now, there will be a fair few so please keep reading if you can!
Image from google - My University
  • Go to freshers - You don't necessarily need to attend all of the parties or events going on, if partying isn't your thing don't go, simple as. Freshers is an event that caters for everybody, although it might not be portrayed that way, it really is. The university I attend puts on comedy hypnotists, beach walks with fish and chips, pride marches and so on. Honestly, it's a great opportunity to take part in something you wouldn't usually do and meet some awesome people along the way!
  • Go to the freshers fair - The freshers fair is an opportunity to see a great deal of the things that your university offers you, you get to see people about volunteering opportunities, you can get yourself a buddy to help through your first few weeks at uni (if that service is offered at your uni), learn about the services available if you need extra help and support and find out about all of the clubs and societies you can join if you feel like it. 
  • Sign up for the clubs and societies - Honestly, with most universities there is literally something for everyone! You can find anything from a community based upon your chosen course, volunteering societies, debating clubs, swimming clubs, drawing societies, gaming societies and so so so many more, in some universities there are even Harry Potter societies for those Potterheads among you! It's a brilliant way to meet people with similar interests and ideals. 
  • Create your own society - Can't find a society you like? Why not create your own?! If theres nothing that piques your interest right away then that's a good thing and don't get disheartened!! There, in most universities, is an opportunity for you to build your confidence and knowledge by creating your very own society. So, remember that Harry Potter society I mentioned, if that's not your thing create a Lord of the Rings society or a society for those who like to travel. With university the world is literally your oyster and you're bound to be given a great deal of support to help you in your endeavours. 
  • Access the support you need - This one is really important, if you feel like you're going to need extra support due to your circumstances then it's really vital that you get that help right away. If you've got a learning disability or think you might have one go to your disability support and they can test for certain learning impairments such as dyslexia, dyscalculia and such. If you feel lonely and worried about moving out enlist the help counsellors help, religious services in the university are available for those of you looking for spiritual guidance and financial support from specialist advisors is very helpful when first moving out. You can even access services in most universities libraries where they can teach you academic skills such as how to read properly, how to reference, write essays and revise to best suit you!
  • Get involved with volunteering and fundraising - This is something I've just gotten into myself with the awareness raising for POMC and fundraising, volunteering is an amazing opportunity to give something back to your community and support other people in need, you can get volunteering opportunities that link directly with your course or get involved with something you're passionate about, many students who have a placement in a year of their course choose to volunteer and carry their placement through their volunteering pathway. It's a brill opportunity to meet others who like volunteering and have the same passions. 
  • Attend your classes - In terms of the academic side of things to really get the most out of your course you really do need to attend as many lectures, seminars and practicals as you possibly can, this is a given as if you don't go you don't get the extra  in-depth explanation of a topic... even if sometimes it does seem like lecturers are reading off slides you need to remind yourself that sometimes students in the class may bring up good points who you should be there to note down as every little helps. I think almost everyone would love a first class degree, right?
  • Make a budget - Again, this is something I have only learned recently as well. Often when you get student finance for the first time it can be a shock to the system, especially if you're living at home, to have that much money all in one go and you might be tempted to go mad but really it's much easier if you set out a budget first. Make sure any direct debits that need to be paid are paid on time and all outgoings are sorted first because then you know what you're left with and can use that as you see fit. Just make sure that you aren't leaving yourself short so you have no money to g out and do fun things. If you need get help from the universities financial advisors.
  • Keep in touch with the ones you love - This is very important regardless of if you're living at home or away. If you're living away you'll obviously feel lonely and miss your family and it can be extremely daunting the first time you leave, keeping in touch with them can make you feel at ease knowing everyone is okay (and they miss you as much as you miss them) but by keeping in touch things will gradually get easier, if they don't maybe consider if you've modes out at the right time. When living at home always make time for your family, sometimes with a very heavy workload and lots of exams you can lose yourself so make time for your old friends and family so they know you're still there.
  • Read, read, read! - Reading in university can be very difficult going on to such a different kind of reading from sixth form and college but believe me it is absolutely essential. Reading gives you a greater knowledge of a topic and a much more detailed and in-depth look at it, most of the times reading will be set by lecturers and will be available online but honestly as much as it might be hard at first, do read the books, articles and journals you're given as it will definitely help and all of those little things can be used in essays and exams. 
Well, that's all the advice I have to give right now, but hopefully it has helped and I hoe you all have fun at freshers and have an amazing experience at uni!!
Thanks for reading.

Tuesday, 5 September 2017

Signs and Indicators - The POMC Series

Hi all,
Image from

I'm so glad you've come back to read the blog again, today is something very important however it will have to be relatively short for a few reasons. I'll be discussing any signs, "usual indicators" and typical attributes that those with POMC can display which may lead to one feeling that testing may be necessary. I absolutely must stress that the information for this post comes from professionals I have been speaking to within the last 2 weeks and a number of reliable websites including the Genetics Home Reference website; some aspects of the information will come from experience and this is not necessarily specific to POMC but some parts are! This is because many other genetic obesity conditions such as Prader-Willi Syndrome, LEPR and such can be very similar to POMC, therefore the few signs and indicators I will discuss today will act as a guide to inform you in case you think something may be awry in your own body. It's also important to note that because there is still very little information on POMC and some other rare genetic obesity disorders the information I can give is scarce, however I will do my best!
One we go!

Early Onset Obesity - This is the most common and most indicative sign there there may be an underlying issue in a child's weight, often many parents find themselves under scrutiny from doctors, social workers, teachers and other professionals who tell them that they are most likely doing something wrong. However, if a child or adult had a good diet and manages to keep up with an exercise regimen and still continues to gain weight, this may be a sign that something could be wrong, but do not simply ask for genetic testing on the basis of this one sign. 
Excessive Hunger - Excessive hunger or hyperphagia is another sign of POMC and other  genetic obesity conditions, often with people the hunger can be unrelenting and can impact daily life as *some people have reported thinking of and desiring food for significant port of the day. This is not necessarily psychosomatic and people with genetic obesity genuinely do feel hungry a lot of the time, if the excessive hungry you're feeling is genuine hunger then again it may be worth discussing with a professional or GP. 
Excessive Eating - For obvious reasons this is a common sign of POMC and other conditions, due to the excessive hunger people with genetic obesity disorders often need to be watched or monitored very closely so that they do not overeat, this is usually the case in children mores than adults as children often do not have a sense of restraint and would continue to eat until their hunger has been satisfied, this again leads to weight gain. If you or your child cannot control your hunger or eating habits it may be time to speak to your GP. 
Low levels of ACHT - People with POMC in some circumstances, not all, can display low levels of Adrenocorticotrophic hormone which can lead to adrenal insufficiency, this according to GHR website can often cause periods of severely low blood sugar levels causing seizures, increased toxic substance called bilirubin and a reduced ability to produce the digestive fluid called bile.  This means that the body doesn't make cortisol and aldosterone which are two hormones that help regulate the body in particular ways. It can also lead to insulin resistance in *some cases, regulation of proteins, carbohydrates and fats will be off, blood pressure and cardiovascular function will be faulty as will the body's responses to inflammation. 
Metabolism 'imbalance' - For those with POMC the metabolism is affected differently, if you find yourself eating the same things as your friends and still gaining weight that may be because with people who have POMC retain all of the energy from food which means this energy, because the energy is being stored as a 'safety net' to prevent the body from starving this means the body will gain weight much quicker as the body doesn't necessarily need this extra energy. Metabolism is an extremely important factor in this condition and is one of the main reasons weight gain is so severe and quick, our metabolisms are not the same as the average person and do not work as well. 
Lack of Development in Puberty - During puberty often girls with POMC or other genetic obesity diseases do not develop as they should, they may not ovulate or, in several cases, do not get periods whatsoever, this usually requires some kind of hormone replacement or substitute to give a withdrawal bleed, this is essential to get some kind of support or substitute for periods as doctors, as fat as I am aware, so not know if POMC leads to the increased risk of weight related diseases such as cancer, diabetes and heart disease. However, those who do not have periods can still get a build up of endometrium which if it is not shed can lead to endometrium cancer in some cases. These issues can also lead to individuals not being able or having extreme difficulty conceiving.
Weak or Brittle Bones - Often people with POMC suffer from bones that are brittle, weak or easily breakable, this can lead to fractures and broken bones , some of which cannot heal easily as well as the increased risk of infection in bones, pain and a higher risk of repeat fractures. If this is the case with you it is important that you note this to your doctor upon discussion. 
Red hair and Pale Skin - From what I have gathered there is a great deal of diversity with POMC patients depending on what "variant", for want of a better description, a person may have. In my post entitled What is POMC? I outlined what the condition is and how it can affect different melanocortin receptors, I mentioned that if the MC1R receptor is affected this will impact the colour of hair and skin, if this is impacted in an individual with POMC they have a tendency to have red hair and pale skin, sometimes green eyes can be associated with POMC but not a great deal of evidence or research (from what I am aware or can find out) has been put into eye colour and POMC. This is not the same in all cases though, I must note. Link to my previous post is here!
Sometimes people can often sense when there is something wrong with their body, if you are showing these signs or a majority of these signs it will be worth talking to a doctor about your concerns, it may end  up that you ave a more common condition or one just as rare, either way its very important that you do discuss your health concerns with a doctor as you could get some real help and support that you need. The condition had no rule book so if you're still convinced you may need genetic testing be prepared to be met with barriers to those tests from many doctors. 
Once again I must stress that the information I have used throughout this post has come from a number of websites and professionals I have spoken to in the last fortnight who have discussed the signs with me. If any information is wrong or inaccurate please message me and I will correct it with any evidence that you show me. 
Websites I have used include Genetics Home Reference, GARD, NCBI and Orphanet.
Thank you once again for reading and have a wonderful day! 

Saturday, 2 September 2017

Life Update and Exciting Future Projects!! The POMC Series

Hi again everybody! 
Image from

So, it's been over a week since I made my return to blogging and explained that the focus and style of the blog would shift significantly and oh my gosh the support has been absolutely amazing! I truly cannot thank everybody enough for all of the comments, likes, shares, retweets and such. Most of all I would like to thank everyone who has taken the time to read the posts, to talk about them with their families, I've managed to get in contact with some of you whom have been reading the blog and honestly your stories are so touching and heart-warming. I'm really glad some of the posts have helped you guys and I'm overjoyed that the posts have given some even a slightly better understanding of Pro-opiomelanocortin deficiency disorder! That's the whole purpose of the blog. 

This post will be slightly shorter than usual but I just wanted to give you guys a very quick update on how life has been recently. Therefore, I shall begin with last week, I had been waiting on a phone call from my nurse at Cambridge hospital to find out whether or not I was eligible to take part in a drug trial, last Thursday she called me and turns out that because I only have one gene faulty in one pathway I'm not eligible just yet although she did say that if the drug works well on those with 2 faulty genes and doesn't need any development the tablet should be available to all of those with genetic obesity diseases. I was obviously devastated but that was actually what drove me to get my blog up and running and get so involved with fundraising and awareness raising for this condition; even if someone is not entitled to a drug to help them medically, their lives could be made better if there was more understanding and knowledge in the general public of this disease. 
Obviously you guys know how it went after starting the blog, I developed The POMC Series which is a series including any posts related to POMC and in the first week of blogging I've gained well over 1,000 views, I've connected with some amazing people and managed to do a couple of things I never dreamed I could with this page!

Now, since starting the blog up again a couple of things have happened, both of which I'm extremely excited and hopeful about these two things. First off, after posting the initial post about returning to blogging the President of the University Student's Union and vice president of wellbeing and engagement took and interest in it, who may I say are two of THE most amazing, kindest men I've ever had the true pleasure of meeting, made some absolutely wonderful comments about the blog and was far too kind about me. The president has always made me feel extremely comfortable and welcomed at the university and we met last year on freshers week and had to drag me to get my freshers band I was so nervous! Anyway I approached him after he made the comments and explained what my aim was and how could I work with the university in order to raise awareness and give a friendly face for those who may feel isolated or excluded from others. I had a meeting Tuesday passed which was very emotional and touching for us all I think and we have managed to set out some aims and overarching factors that we want to include or happen. 
Currently, we are scheduling another meeting for  sometime later in the first semester to discuss more ideas as we are hoping to maybe do something around the second semester, this is an extremely exciting turn of events and I'm feeling very confident and determined to carry this on!!

The second exciting thing that's happened is that on one of my posts that was shared by the Student Union president an amazing young woman and journalist has approached me and asked if she could conduct an interview with me about my condition and what has driven me to get to university, this opportunity is so great. I'm aware that this fabulous lady has worked at a number of newspapers and is an exceptionally talented and competent journalist so working with her this Monday is going to be very inspiring and enlightening. She currently writes for the university's newsletter so I will be making sure to ask permission to post that right here, ladies and gents! Keep your eyes open for more information about that. 
So, all in all everybody it's been a bit of a hectic week! I'm so excited to get all of these things underway. To be honest other than those major things all I have been up to is spending time with my friends, spending time with Simon, I had a day out the other day buying all of my stationary for uni which I'm always super happy about! I'm still trying to read the books I got from the Uni library to prepare for the next year (again massively excited about! ONLY 24 MORE DAYS!!), I've been planning, writing and posting blog posts for you all and finally me and Simon are getting ready to head off to York next week for 3 days which will be a long needed break away so I shan't be posting those few days although i will have a lot to post about when we get back!!

Exciting times are a'coming! 
Thanks for reading guys and I'll keep you up to date on everything going on, I'll also be posting a few more POMC related posts so look out for those! 
Have a great day!