Thursday, 31 August 2017

Stigma and Lack of Knowledge - Hints and Tips to Cope

Good morning my lovelies!
Image from

I hope you're all having a good day, today's post is something that I, myself, and many other people with rare conditions have struggled with over the years. I'm aware that there are parents of people with POMC who have struggled with this also and this is a problem that truly must be tackled. This problem is stigma.
 Throughout this post I  will be discussing stigma and a lack of understanding those with genetic obesity diseases often face; I am, however, fully aware that stigma is not only attached to genetic obesity conditions but a countless number of diseases, disorders and other illnesses people suffer from, I'll be discussing genetic obesity on the whole as that is what I know best but this information and advice can be applied to whatever impairment or illness someone may suffer from that doesn't get the understanding it requires.
Over the years I have found that it's often been very difficult to get the support needed from friends, schools, medical professionals and even family because there is a huge stigma against those who are obese, just as there is with people who have, say, dermatology conditions, people often see such ailments as contagious when they are far from that. In terms of obesity however, we live in a society with strict rules on what is and is not acceptable for weight and body size, often times people look at me (using myself as an example as I have no right to assume about other's experience) as if my body is doing them wrong in some way, they look at me as if I am offending them with the size of my jeans, as if I have personally insulted them by me being fat. I could discuss society and social stigma around obesity for hours but i shan't bore you with that just yet; no, what I will say is that because many people do tend to look at an obese person as somebody who overeats, is too lazy to get out of bed and point blank refuses any healthy lifestyle activity it can be extremely difficult to get people to understand that there can be a real, genuine medical condition behind the weight. I'm aware people with PCOSleptin receptor deficiencyPrader-Willi Syndrome and many more conditions have been faces with a great lack of understanding in school, when schools were not fully supportive of obesity related illnesses due to their underlying medical conditions, meaning their school lives were made much more difficult; this is absolutely the case for me also as my primary and secondary school both took a great deal of convincing that I was ill instead of believing my obesity is genetic rather than anything else. 
Image from

GPs and doctors often tell me to lose weight then my back will feel better, they fail to understand that that for me and many other people is not always possible. Often this can lead to people, again regardless of condition, feeling very frustrated,  scared and isolated if they feel their medical needs aren't being listened to because a lack of understanding can stem from stigma around an illness. For example, often people with Myalgic Enchephalomyelitis (ME/CFS) can be met with claims that their illness is psychosomatic (or "all in their head) which reinforces the stigma that those with ME are viewed as lazy or uncooperative/unsocial, which is not the case. Therefore, I have created a small list of things that you can do to help accurately inform GPs, schools, friends and family of your condition so you can be less stigmatised on your own terms as well as give people a better understanding of your illness. 

  • Create an information sheet/leaflet or poster - If you can do some thorough research on your condition and put it together into a leaflet or information sheet, including how the illness affects you specifically, what your medical and emotional support needs are, how a school or GP surgery can support you and what to do in an emergency (if applicable) can often be extremely helpful so people are able to get a clear idea of what you deal with and how to help you be that best you can be. For example, mine includes a section of what I can do/how I feel on a good day and what happens on a bad day. This so far has been helpful in not only getting support but also writing things down has helped me recognise the signs of when I'll be having a bad day. 
  • Getting the right support - In terms of schools, colleges and universities there are usually many different ways they can offer to support you, it's important that if you feel you need some extra support then go for it! Gather as much information on, for example, the services your university offers, they usually offer services and support from counselling, financial advice, academic support, disability support, buddy systems and much much more. These are often a wonderful source of help and understanding without judgement, and you are less likely to feel so alone if you tell people openly and honestly what your condition is and how they can help. You may make some good friends that way too! GPs can offer similar services so make use ladies and gents!
  • Get in a guest speaker - Now this one can be difficult. If you're under the care of a particular team in a hospital or similar setting, asking one of those practitioners to come and talk to your school/college or university can be extremely helpful and very enlightening for those people involved in the meeting. As a child my grandparents arranged a meeting with my school teachers and form class and my specialist endocrinology nurse to discuss exactly what is "wrong" with me. Often times getting someone with more authority to explain a condition is much better than getting parents and grandparents to explain it for you. 
  • Document doctors appointments - Something I've found very helpful in the past is writing down or recording and transcribing hospital appointments. If, like myself you go to a number of appointments or are under the care of one main hospital for the majority of the time, it may be a good idea to keep a record of all conversations from those hospital appointments and often doctors from one area do not communicate with other doctors, for example one doctor told me that I am not able to have bariatric surgery as my weight gain would not be stopped by this according to her, however another wanted me to have that surgery despite me telling them no. If you keep a record it also allows accurate information to be given to different professionals, you can show teachers certain parts of the transcripts, give them to your GP to look at, show family and friends what is going on and how your condition is progressing so they can get a better, more realistic understanding of your illness. 
  • Have a chat - If you're lucky enough to have understanding family or friends, simply having a chat could make all the difference in the world. Some people are more responsive to informal talks over a cup of tea or coffee, talking things over in a relaxed and comfortable way can give somebody a much deeper insight into what you go through and how they can help. Sometimes when you're talking to a friend or family member you can tell them information you may not feel comfortable telling other people, and this network of people can be your strongest support systems in the darkest of days. 
Well, that's it everybody, thank you so much for reading, please keep sharing, commenting, supporting and reading. I honestly hope this has helped somebody! Remember - KEEP FIGHTING! 


Monday, 28 August 2017

Keep Fighting - The POMC Series

Hey again,

Hope everybody is well, this next post will be a short one as I'm lacking in energy today but definitely have a couple of posts coming up that you should find interesting.
I wasn't going to post today as me and the family went out for the day but I've decided that if qany day is a good day to demonstrate the reality of how POMC can affect people it's today.
Beautiful Whitby Town - North Yorkshire

Today was a really bad day, to be honest. I woke up feeling pretty good, well rested and such and I knew me and the family were heading off to Whitby for the day, one of my most adored places I've ever been to, and I was visibly excited. After a cup of tea I went to get s cold shower because I could feel myself beginning to overheat, despite windy and pretty cloudy weather, my body temperature kept going up and I was just sweating more and more so I took 5 minutes, tried to keep myself hydrated as much as possible and got myself dressed quite quickly. 
Me and Simon got into the car and went to Subway for our lunches, we decided to go there as I'm not keen on just grabbing whatever I can wherever I can, I've learned that food is best planned well in advance so I know what I'm putting into my body compared to the energy I'll be using up, I just feel it's the most sensible decision for me. Other people are different though. Anyway as I was driving I honestly felt like my body was slowly turning to lead, as if I weighed twice what I do now but I pushed it to the back of my mind and hoped I was going to get a good day out of today. 

Nanna and Granda, who we went with, eventually got home and I packed a bag with inhalers, water, phones and everything else we would need and headed off. While I was in the car I could feel my legs turning numb, my granddad's car is very low to the ground compared to mine and I find it extremely difficult to get out of, the seat belts also don't fit around me without an extender so it's not the best car to travel in. Anyway  like I mentioned I felt the numbness creep up my legs and a dull ache hit my lower back which was there all the way to Whitby, along with the overheating feeling which was exacerbated with the weather turning sunny and hotter the closer we got to the coast. By the time we got to Whitby there were no parking spaces so me and Simon tried to get out to walk on ahead; I don't think I managed getting 12 metres before I was sweating in pain with my back and my knees started to ache. I've always been self-conscious of looking like the stereotypes version of an obese person, someone who is so large they cannot walk properly, mainly because when I've tried to explain that I'm not simply over-eating the wrong things without exercising and have a genuine medical condition I am met with looks of disbelief and dubious scrutiny. At this point I walked a little further and had to stop where my anxiety got the best of me as I was convinced everyone was looking at me. I broke down and cried on Simon, insisting I go home and we go for a walk privately around our local area later today when I feel better. So, not only did I not get the day at Whitby we all wanted but I feel I've held back my family and boyfriend, something I'm not unused to feeling. 

Somehow though me and Simon are still determined to do that walk, determined that pain won't stop me from cooking family dinner later and it will not stop me being a happy person overall. The point of this post was not to complain or whine or make people feel sorry for those of us with such problems, it was to remind parents of children with POMC or any genetic obesity disease and those directly dealing with POMC/genetic obesity themselves that no matter how hard the days might seem, how much you want to give up fighting or feel hopeless always remember that the condition you have is there to be fought and we are all warriors in this battle, nobody is alone with a strong support network around them of family, friends, partners and even medical professionals who help you cope. You are a strong person with better things to do and live for, than to give in to anything at all! Even if is is easier said than done at times, please keep fighting! 

Thanks for reading. xo

Sunday, 27 August 2017

My Story - Adolescence to Adulthood - The POMC Series

Hello again lovelies!

This is the second instalment of my story, recounting my journey from birth to present while living with POMC. I must give a warning for this post as it will contain slightly more specific information on my development through my teenage years and so and information is, once again very sensitive and personal; however, please feel free to continue to share and like these posts as every little helps!
My first day at comp - 11 years old

I ended the last post by claiming that at the beginning of adolescence was where the real battle began, hopefully you'll understand why. After finishing primary school the next big thing was on to comprehensive and I can honestly say that was the worst time of my life, no exaggeration. By 11 years old I fully understood what I was expecting to happen to my body in the process of "becoming a woman" if you catch my drift, all of the usual things happened I gained more weight as I aged, my body changed shape so I got more of a feminine figure and I started to hold my weight differently. I mainly help my weight in my lower stomach, things and face which did absolutely nothing to help the curve in my spine, that got so bad that even to this day I cannot walk 6 metres without feeling the numbness and pain creep up my calf, thigh and up to my hip and lower back. Honestly, the pain is agonising, I get sweaty, sickly and dizzy with how much it hurts. All of this at 11 years old, although Ive admittedly gotten better with dealing with it, it hurts nonetheless. Yet, somehow at 11 I had reached a massive 16.5 stones in weight, my blood pressure, sugar and cholesterol had all stayed on a level of someone who weighed around 7 stone; at least I had that. 
My 13th birthday

The bullying continued into secondary school, I couldn't walk through the corridors without having some form of abuse shouted at me, some nasty remark. Comments like "You should go and kill yourself" and "you're so ugly you should've been aborted" were regular occurrences, almost daily to be honest. I never got anymore beatings but I feel like a beating a day would have damaged me less than the cruel comments I got did.
By my 13th birthday I'd contemplated suicide and self harm on a number of occasions, never believing I would do anything, only wishing I had. I was put on anti-depressants at 14, I never ever left the house, and to show how serious it had become I developed a sensitivity to the sun that is now so severe I cannot be out in the sun for more than one minute without blistering, literally. All because I couldn't bare getting abuse thrown at me as soon as I left the door. I dropped countless days at school, didn't do anywhere as well as I could've done, teachers allowed me to leave the classroom 5 minutes before bell went so I could get to my next class without  getting abuse, I was allowed a toilet pass to leave whenever I needed to as by this point I had developed severe anxiety as well. But I had managed to find an outlet in playing the piano, clarinet and singing lessons. 

From ages 13-17 (the picture to the right is me at 16, almost 17) my weight gain did continue but at a much slower rate, despite that being the most inactive time of my life, like I said I didn't go out at all, probably ate worse than I should have as I simply didn't care about myself by that point. Everything developed as usual expect one aspect of my body. I hadn't developed certain aspects of puberty, menstrual cycles being one of them, at 15 I was put on Medroxyprogesterone so as to induce them. That's been going pretty well ever since no changes there really. I did however get diagnosed in January 2014 with Polycystic Ovary Syndrome via a routine blood test, and an ovarian cyst indicative of Endometreosis in 2015 as I was rushed into hospital with severe lower abdominal pain in late April 2015. Doctors have told me this cyst can be removed but nobody is willing to operate on a woman of my BMI, I get me with a resounding "lose weight first" even after explaining my situation. Sometimes it seems impossible to get professionals to listen to you no matter how much you tell them. Recently, I have discussed my Gyno concerns with a professional who specialises in POMC and I was told that they are not aware whether or not POMC can cause such problems and have advised I continue to keep an eye on it. If any female with POMC does read this I would advise going to see a specialist about the issues right away. Keep it under control as soon as you see it. 

After finishing school/sixth form in 2014 and beginning a course at New College Durham, who may I say were reluctant to believe my condition was real, despite being registered disabled because of it, bullying had died down significantly in a more mature environment although had not fully been resolved. By 18 ears old my hunger had not lessened but my diet and exercise regimen was improving massively, I was forcing myself not to give in to my hunger, some days were terrible others not so bad. I would usually keep myself busy and whenever I felt hungry remind myself of how disgusting I was... clearly my mental health and self-esteem.image was not on the up at all, I still never left the house or went anywhere really. Not much else can be said for my 18th year. I just plodded on. 

By 19 years old I had started to seek help for my body image, using a number of self-help leaflets, talking more to friends and family, being open with lecturers and teachers about what I needed and gradually my opinions on myself improved, I did really well in college and managed to secure a place at the University of Sunderland studying social work, which as it turned out I wasn't suited to, and changed to Sociology. All the while this is going on I was in a relationship with the most wonderful man I could've ever wished for, he has dealt with a lot and will hopefully be posting about being in a relationship with someone who has POMC sometime in the future. 
Very dark! Me and the best friend on my first night out earlier this year :)

I am now a 21 year old woman, my self-esteem has never been better, I'm engaged to the man I love, I'm getting out and doing things and I have a life that 13 year old me never dreamed I could while having this condition. However, in recent months, this past year, I've noticed my weight has increased more than it should have, in the last 5-8 months I've gained 5 stone while maintaining an exercise regime, I have developed a condition where my knees have turned in opposite outwards directions of one another (pigeon toes) and my spinal curve is stopping me sleeping as it's impossible to find a sleeping position. I have also developed sleep apnoea, a condition where I can stop breathing at any point throughout the night because my throat can close and there is significant pressure on my chest, something that people with POMC must look out for, I had also developed an overactive hypothalamus, meaning my internal thermostat has stopped working properly and I have a tendency to dehydrate extremely quickly and overheat. I am also now double the weight I was when I was 16, terrified of dying young because of this awful incurable and untreatable (as of yet) disease, all support and help goes towards stopping young children with this feeling so scared, maybe there will be a treatment soon enough! 

POMC is, as I have been told by professionals specialising in this area, supposed to lessen with age  in their exeperience, the weight gain in their experience has in some circumstances evened out as has eating habits in some, I am living proof that this disease does not play by the rule book. Bear in mind also that I am one of the lucky ones, there are people out there much worse off that I am, those are the people that need this support and awareness most of all! 
Please if anybody had any questions, comments or so on, do not hesitate to contact me. I'm available all the time so if you want to share your story of living with POMC or a genetic obesity disease get in touch and I'll be more than happy to help! 

Have a great day all! 

My Story - Infancy to Late Childhood - The POMC Series

Hi All!
I hope everybody is well and I'm so pleased people are continuing to come to read the blog, the support has been awesome, thanks guys! Today's post in The POMC Series is very very personal and sensitive to me and will outline my life from birth to diagnosis, development with POMC in terms of the medical side of things to give people a better idea of how somebody with POMC can develop and survive. Let's begin.

I was born on December 14th 1995 in the early afternoon, from what my mother has told me  her pregnancy was good and there was nothing to make her think anything would be wrong, in fact she once describes being pregnant as "the healthiest time of [her] life". My birth was pretty normal and everybody was happy to have a bouncing baby lodging with them now, I was quite average for the first few weeks of life until at 9 weeks old my mother took me to the local GP surgery explain she felt I was gaining weight too quickly as I'd reached 16oz. She was told she was being an overly anxious young mother and my weight would level out, so she went home and thought she would keep and eye on me. 
Me at 9 months with my amazing Nanna

By 1 year old I had hit all of the appropriate milestones by that point, I was walking at 9 months, but I did not like to be touched and didn't cope well with certain noises like the grass cutter,  I was extremely picky about how I would play with my toys and being removed from my routine would upset me hugely. This lead my parents and grandparents to take me for an assessment, which lead on to an Autism diagnosis. However, those diagnosed with POMC have a tendency to have sensory issues, a sensitivity to certain noises and textures, not only textures of food. In my case I couldn't be touched or eat foods such as crunch veg/fruit or bread because the texture doesn't agree with me. 

I eventually went to nursery at 3 years old and the image to the right shows how much weight I had gained, which is clearly more than the average child. I was, at that point, not under the care of any doctor and had not received a diagnosis, doctors repeatedly told my mother she was overfeeding me but didn't look any further into it than that (although I was cute! I mean come on, say 'no' to that face!). When I went to my local nursery issues started arising, each year I remember being forced into a classroom and being told to take off my shoes so I could be weighed for a health check up, along with all the other children, being nearly 4 years old now I can remember this and it was unpleasant to say the least, I remember hearing what a man was saying to the teachers as I got off the scales "This girl is far too fat, phone her mother", so my mother was called and raised holy hell with them, she thought the situation was a barbaric as I did, my whole family at this point was convinced something was wrong but again, doctors simply told my Mam to get me moving more and feed me less. Thing is, I was always dancing, running and playing around, I thought I was "normal" until I went to nursery, but bullying, which I will get to in less retail later and more detail in another post, absolutely crushed my idea that I was average as did this traumatic experience with the scales. 

Me at 4 - close to my diagnosis
At 4 years old I was changing my personality, I stayed away from people at nursery more and went outside a little less, mainly playing in my back garden because I realised people were looking at me because I was fat, still it didn't stop me being happy. One day I took poorly and was taken into Durham hospital Treetops ward for children, I had had a number of tests done one of which being blood. A doctor who later became my regular paediatrician at the RVI told my mother something in my bloods was missing, he then told her to take me to the RVI immediately, this was obviously a distressing time for my family not knowing what was going on. It was at the RVI after numerous, extensive tests and genetic analysis, nights spent in the RVI, days of nursery and school, that Mam was finally told I had POMC deficiency. I don't know if I was told right away but I do remember being told that I "wasn't like everybody else" by family and thinking "Mammy and Nanna are crying so I have to be brave" but after being told in as much detail as you can tell a 4/5 year old, sitting behind our armchair and crying silently. 

After my diagnosis I was regularly at the RVI in Newcastle where I got fab treatment from the Doctors and nurses who even let me paint up a wall for Christmas, which was so so fun! The focus for doctors at this point was keeping my weight maintained as they knew very little about the POMC in 1999, so with regular hospital appointments and check up it got to the point where I was told I needed to go to Cambridge Addenbrooke hospital to meet the chief doctor, as I called her, who studied this disease. I stayed two nights in Cambridge hospital where I was tested every 5 minutes for blood pressure both pre and post exercise, I was given blood test after blood test, an ECG and many more tests. At the end of the experience I was told that after all of that the doctors were surprised to find that everything was in full working order, my blood pressure was perfect, resting and exercising heart rate was extremely good, blood sugar was completely normal, as was cholesterol. Basically, the only thing wrong was POMC affecting my weight gain, thankfully I was healthy. I was 6 years old when I had my first Cambridge visit. 

When I started normal school at age 4, as mentioned previously bullying did become a problem, a major problem. The older I became the more weight I gained and to be brutal it was a free for all among the students with me. I was taunted day in and day out at school, nobody would play with me, I honestly did go through primary school without one true friend, mainly I was excluded to the point where on a break and dinner time I would push myself into a corner of the playground and read and read and read until the bell went. My school was particularly unhelpful and unsupportive as at one point in my school life teachers would berate me for having time off of school, some days my legs would hurt so much because of the rapid weight gain, I couldn't walk properly and didn't feel up to school at all, some days I just didn't go because at 6 years old I couldn't take the bullying anymore. There was one day I was in school at 6 where a group of boys came up to me and just started beating me because of how I looked; a fighter to the last I kept telling them I would win but they didn't stop until a teacher called them as they didn't know where they were. Safe to say my Mam and Nanna went up to their parents house and I didn't get that badly beaten ever again. 
For all of the parents of children with POMC do not EVER let any school, establishment,  adult, or child take advantage of a child the way my school was allowed to, one teacher would come over to my lunch table every day, as I took in packed lunch because I was picky with eating certain foods and textures, and she looked into my lunch box everyday she saw me to tell me what I was eating was disgusting and would make me fatter. Right here on this blog is the first time I  have ever disclosed that information. From that point on I have never been able to comfortably eat in front of anybody. 
Me at 8 years old, drawing away my troubles.

At 8 years old I was well into my primary education now and I was learning quickly that there were certain things I couldn't do, because of my weight I had developed exercise enduced asthma, I wasn't able to participate in P.E., I wasn't able to always go out with neighbouring children to play games due to pressure on my knees, back and legs, I had developed a curvature of the spine and a condition called Lordosis, walking became more difficult and the spinal curve made and still does make my legs go numb when walking for more than 10 minutes at a time. I was, although I didn't know it at that point, becoming depressed and more and more isolated so I found my pleasures in reading and drawing as you can see to your left.  

My regular hospital appointments continued, as did a steady weight gain, excessive hunger and the crowd of people at school, in the GP surgery and outside of the house, who would berate my weight, tell me to get more active and eat less. My family tried feeding me different things, less calories, watching me at all times with food, but they had no idea that the less they gave me to eat the more starving I became. It was when I started secondary school however that the real battle would begin...

Thank you all for reading this post, I apologise for the length of it, I hope this will help some of you understand how difficult it can be for children with POMC. In my next post I will move on to my journey from adolescence to adulthood, you can expect that out at some point tomorrow. 

Thank you all. XO

Friday, 25 August 2017

What is POMC? The POMC Series

Image from
Good morning my lovelies!

I'm very excited for the first post in what I've called 'The POMC Series' which will explain in as much detail as possible and as accurately as I am aware how the condition works and affects my daily life and such. I will be referring to my development a fair bit throughout the writing of these posts unless I have information I am allowed to use regarding other people; I'll refer to myself as I have no right to assume how other people have developed with this condition or how they cope. Hopefully I'll be able to get interviews and written articles from those I've been connecting with. Right, now I will move on to the crux of the matter and start with all the science-y stuff! YEY!

What exactly is POMC?
POMC is a gene in the body that everybody* has and contributes to their genetic makeup, it gives instructions to the body to make a protein called pro-opiomelanocortin, which after production is split into smaller pieces called peptides. These peptides all have a very different role in the body, mainly sticking proteins into different areas of the body to alert signalling pathways to control different body parts/systems. Think of it like a car, if you put the keys in it signals for the ignition to come on, then the engine, if something in that process within the car goes missing the job can’t be done. 

How does POMC work?
Pro-opiomelanocortin produces another protein called adrenocorticotrophic hormone (ACTH) which sticks to something called a Melanocortin receptor (MC#R) of which there are 5  in the body. ACTH sticks to MC2R which releases cortisol that is in control of maintaining blood sugar levels, protects the body from stressors and stops inflammation; people who have this part “missing” are at great risk of developing kidney problems, adrenal insufficiency, blood sugar will skyrocket and are often insulin resistant. This is associated with the POMC deficiency disease in some cases, however in my case doctors are unsure as to why only my POMC gene and MC4R (which I will get to later) is non-existent. In terms of health my blood sugar often goes quite low and I am at risk of hypoglycaemic shock. I also have significant resilience to stress. 

Three more peptides of POMC similar to ACTH are alpha- beta- and gamma-melanocyte stimulating hormone (a-MSH etc.) Alpha is responsible for producing pigment in skin and hair and attaches to MC1R, suggesting that those with this receptor inactive or missing should have red hair, green eyes and pale skins as they will lack melanin. I do not have this as I am a natural blonde with olive skin and very green eyes although I have connected with individuals who have shown typical features suggestive of a lack of MC1R.

Beta plays a role in weight gain regulation by sticking to MC4R, which I mentioned earlier. It signals the receptor to help keep even ground between energy taken from food and energy stored in the body, those missing this so tee more energy from food than is necessary and will find it difficult if not impossible to release any large amount of that energy. As a child the Professor whose care I was in explained it to me in a particular way:
Imagine a light switch in your head, in most people when that light switch is on that tells them when they are hungry or not, yours doesn't turn off, so that means that your body always thinks your hungry and will look after the energy you get from food better than most people would. This means that it’s hard for that energy to get out of your body and makes it much harder for you to lose the weight. 

As I got older more and more doctors explained it to me, they would explain that because the energy from this faulty receptor stays within the body it’s almost like fighting with myself to try and release that energy as it’s hellbent on storing it. I like to think of it that my body is storing the energy for a Walking Dead type of affair and then it’ll miraculously start to work and I can be as badass as Rick Grimes… that’ll never happen, right? Anyway back on topic. 

It’s suggested that MC3R is involved with another hormone to regulate sodium within the body and keep cholesterol levels down, once again it is important to note that each case is different with some overarching similarities in the conditions but I have perfectly normal if not healthy levels of cholesterol, some individuals are not as lucky as us by any means and are at risk of very serious complications such as heart attacks, fatty livers and so on. 

The final MCR is MCR5 which unfortunately I know very little about. Although not a great deal is understood about all of this by myself I am doing by best to try and describe it as well and accurately as possible, the information I have obtained has been through extensive phone calls from highly trained and experiences nurses, Doctors and informative websites specialising is rare genetic obesity diseases.

Other information
So basically, this condition is characterised by extremely early onset obesity, that weight gain is not likely to stop and can be very rapid, in the last 6 months I have gained 5 stone despite doing over 6 hours per week exercise and eating a diet of less than 1200 calories per day. That is an example of how serious the condition is. 
  • It causes extreme unrelenting hunger and excessive eating, as a child and I know this is true for others who have the condition, the fridge and food was controlled massively, I was monitored and watched in the kitchen a lot of the time but nobody could understand (obviously at the time I didn't know it was the best thing for me) that I was desperately hungry and just wanted to stop that feeling. 
  • The main production of these hormones are centred around the pituitary gland, responsible for hormone production. 
  • It affects the endocrine system.
  • Symptoms can be different from boys and girls, for example I spoke to a nurse yesterday who said gynaecology issues in girls may or may not be related to the POMC deficiency, which are definitely present in myself but I'm unsure about other women who have this. 
  • Weight gain can continue despite rigorous exercise and good diet. 
  • There are 50 officially recorded cases of POMC, my dad and me being 2 of those and it is estimated it is only between 100-500 people globally that may have the condition or some variant of it. 
  • It is not curable and as of right now there is no treatment whatsoever, although some drugs are being tested right now and have seen extremely hopeful results for some, I am not eligible for the trial this time but hopefully next time. 

I feel I need to point out this this disease is extremely scary as I and those others suffering with it have uncontrollable weight gain that, frankly could be fatal to those suffering from it if it puts too much strain on our hearts, so please again just try to get the word out, help however you can share the posts or talk about it with friends because it all helps raise awareness. All of the information is as accurate and updated as possible, I obtained the info from highly trained and experienced doctors, nurses and practitioners as well as websites specialising in rare genetic obesity disorders. 
Thank you all for the amazing reception that the previous post received, I was so overwhelmed and really feel like we can all help raise awareness for this awful condition!! 

Have a fab day everyone!

Thursday, 24 August 2017

Long Awaited Return!

Hello lovelies!

Wow, it's been well over two years since my last post and SO SO SO much has happened and I can't wait to tell everybody!
First thing's first, I'm very sorry for the long break, my health deteriorated massively for a good while, it's far from being back to normal now but I've recently been slapped by motivation to get back to blogging.
I'll give you all an update about my life in general right now then get on to something more personal and important to me if that's alright! 

Well in 2015 just after I was diagnosed with an ovarian cyst I actually met a guy and we have been dating for 2 and a half years, his name is Simon we are now living together with my grandmother and although it is quite difficult and sometimes cramped we are very very happy. He's honestly the most amazing man I've ever met and looks after me better than I could've expected. On December 14th last year, which happens to be my birthday Simon got down on one knee and proposed, since then we have been very happily engaged for almost a year and are hoping to tie the knot around either the end of 2018 or 2019 depending on finances, although admittedly I have already bought my wedding dress, oh I wish I could show everybody it but it shall have to stay hidden until the big day. 

In September 2016 I started university on a social work degree at University of Sunderland, I was absolutely miserable for two months on the course and got very little support partly because I wasn't able to stand up for myself and tell the lecturers what I needed, however one day after discussing whether or not I should drop out or do social work part time Simon pushed me into the office of the programme leader of Sociology. I absolutely adore sociology and Simon knew I would be happier there, it was a struggle but after a while the leader decided I could change courses and managed to get caught up within a couple of weeks and since then I've been overjoyed studying a subject I adore, I finished this year with 6/12 assignments being first class and the rest very solid 2:1 grades. 
Other than that there have been many ups and downs, me and Simon have both lost friends, gained new ones, had many many new experiences both together and separately, we have tried to move out, been screwed over by our local council, lost that house and moved back in with family but all of it has been a good experience for really growing up and maturing. I've been learning to cook, learning to love myself, learning to go out and be unapologetically confident in who I am, I've seen the Rocky Horror Picture show LIVE (OMG WOW!!!!), I've done things I never thought I would in my entire life, and it's been a hell of a time!
We have attended appointments and the Centre for Life to find out about our fertility as a couple, I've learned a lot more about myself and about my medical conditions which has been very enlightening. 

So, with that update out of the way there's something very important I need to move on to if I may. When I was only a little sprout, about 5 or 6 I was diagnosed with a disease known as Pro-opiomelanocirtin Deficiency Disorder (POMC), which is a very serious and extremely rare condition that causes severe early onset obesity, my dad also has this condition and it affects us both very differently, I don't want to say too much about it as I will get to that soon.  Recently I've been learning a lot more about my condition that affects pretty much every single aspect of my life, I've been looking for treatments, trials and support for people with this and similar conditions, I've connected with some lovely people who have taught me quite a lot in a very short amount of time and one thing I have realised about this condition is that there is not, anywhere near enough information or awareness about this disease for the general public, schools or even in GPs surgeries. Thus, I'm making a major shift in the kind of blog this will be, I am going to be posting a lot more about this condition, my journey and others' journey living with this, I will hopefully be able to contact others and find out about how they live with it. I want to document everyday life of somebody who has POMC, how it affects them, what kind of support there is available. Should I be lucky enough to trial a drug that's being tested to manage it now I want to document the process of taking it honestly, without any faffing or fussing. People need to know the truth of such a condition as it is very serious, life-threatening and difficult to live with as I have found out first hand. I would appreciate it if these posts can be shared as the purpose of this blog now is to raise awareness of POMC even if it is just in a small way, every little helps after all. 
However, do not despair as I am fully planning on keeping the lifestyle aspect of the blog running and I have many more ideas for advice posts, support, general discussions and so on but the posts may be less frequent than before as university is going to get more heavy workloads particularly in years 2 and 3. Please bear with me if posts aren't coming as thick and fast as liked. 
Thanks for reading and I hope you all come back to read more!

P.S. I want to thank everybody who, in the two years that I was gone, continued to read and comment on and share my blog posts, you're wonderful people and you're the reason I came back to this blog instead of beginning a new one! I hope you're all having wonderful lives yourselves!!

Katy. xo