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! 

xo.