Posts by B.B. participants: Megan Whitehouse

As this month (May) is EDS awareness month I thought I'd put together a post explaining what EDS is and how it affects its sufferers. 

As an EDS warrior myself this is a very important month for me as raising awareness is so important as this condition is rare and is often missed by doctors so patients often go undiagnosed for many years! 

EDS (Ehlers Danlos Syndrome) is a rare connective tissue disorder that causes the body to produce faulty collagen. Collagen is the 'glue' that holds our body together and is found all throughout our body. In our ligaments, muscles, joints, organs, eyes... This faulty collagen weakens the tissue that supports the skin, bones, blood vessels, arteries, internal organs and more. 

There are 6 'main' types of EDS (these are the most common types). These are; Hypermobile Type, Classical Type, Vascular Type, Kyphoscoliosis Type, Arthrochalasia Type and Dermatosparaxis Type. Though I've only listed the names of 6 types of EDS there's actually 12 known types of EDS that have been discovered (so far) though the other 6 are extremely rare. 

Symptoms vary depending on which type of EDS you have and no two people have exactly the same symptoms but the most common symptoms are; Hypermobile joints, soft velvety skin, easy bruising, poor wound healing, abnormal scarring, joint dislocations/subluxations, chronic pain, stretchy skin and many more.

Common comoribities are; Chiari Malformation, TMJ, POTS, Dysautonomia and CCI. 

Posts by B.B. participants - Nicole Gray

I feel extremely proud of myself for what I've managed to achieve thus far. My education is something I feel extremely passionate about. Circumstances have lead to me facing a great deal of adversity where my education has been concerned. If you'd have asked 13 year old me what my future plans were I'd have replied: staying on at school until I was 18, applying to University, gaining good results in my examinations and finishing University by the age of 22. Unfortunately my life didn't quite go according to plan and I was thrown into a life living with various chronic health problems from the age of 14/15. My once very good school attendance dropped dramatically, so much so that my final few years of school I can probably count on one hand the number of times I managed to attend a full week of school. I faced some very negative comments from other people where they expressed their opinion regarding what they believed I should do in terms of my education. University was my biggest ambition in life however instead of supporting me (which very few people in my life did) I faced comments such as "you'll never get to University so why bother?" "just give up now", I was even removed off my higher English course as my school didn't believe I would achieve a pass in it (thanks to my amazing parents writing a letter to my school I was allowed back on my course). It didn't matter what people believed, I was out to show that I was capable of achieving great things. \

I should have finished school at 18 however on evaluating things I made the smart decision of asking if I could repeat my final year of school as I felt I wasn't in a position to pass my exams due to my poor school attendance, thankfully my school allowed me to do this. After finishing my final year of school during what should have been my summer holidays, I attended a 7 week long summer school set at 1st year University level (I actually only managed to attend 5 and a half of those weeks due to spending time in intensive care, I even had to sit one of my subject's exams at home). My University condition, to study a BA (Hons) in Psychology, was achieving BBBB (I had to have a B in English) in the 4 Scottish Higher examinations (English, German, Maths and Modern Studies) I sat in my final year of school, on getting my results back in August 2013 I had achieved BCC (B in German, C in English, C in Modern Studies and I failed Maths), however on accounts of how well I did at summer school (I got AAB in the 3 subjects I studied) as well as having several different extenuating circumstances I was accepted to study BA (Hons) in Psychology. I will forever be so proud of myself for what I managed to achieve, I will forever remember the moment I found out I'd been accepted to University, I've never been more proud of myself as I was on finding out I had did it. 

Throughout my time studying full-time I faced a great deal of issues related, once again, to my attendance as a result of my health issues. I very much struggled to attend classes. Unfortunately due to this, and due to so many hospitalisations, I could not sit my final examinations which were required for me to pass my 1st year so I was now allowed to progress on to 2nd year. I applied to repeat my 1st year in the hopes of passing the year 2nd time round, this repeat year was granted. I also applied for a place in student accommodation for this repeat year and was granted a place. It was fantastic experiencing my first real independence, I throughly enjoyed the different experiences this independent living gave me and have fantastic memories of my time in student accommodation. Throughout this repeat year, unfortunately, things in relation to my health worsened to the extent during my 2nd Trimester I was unable to attend the majority of my classes (I think I managed a total of 5 classes that Trimester), again I missed most of my examinations and, again, was not allowed to progress onto 2nd year. There were many tears in response to this however after much deliberation I made the heartbreaking decision to withdraw from my Psychology course on medical grounds. I felt completely hopeless, my health had already taken so much from me but it was heart-wrenching feeling like I had to give up something I'd worked so hard on. However, my story was not completely negative and in time I found that despite my initial thoughts being that there was no possibility of "every cloud having a silver-lining" in relation to losing my University place, I found my rainbow after the storm. 

I decided one day, out of the blue, to look into and enquire about 'The Open University'. They provide flexible part-time distance learning with a wide range of different courses. I jumped at the chance of enrolling on one of their courses and registered for their BSc in Health Sciences, I've truly never looked back since. This is my 3rd year with them and I will soon be completing my 2nd module (I'll have a 1/3rd of a degree!). Yesterday I received the result of my 4th assessment where I gained 90%! I feel so proud of myself for everything I've managed to achieve in spite of the health adversity I continue to face. I am doing this for me. I am doing this to show myself that I am capable of achieving fantastic things and that not giving up can truly give you great things. My degree is part-time so I won't achieve my full degree until 2022/23 however I am more determined than ever to do this. I am more than a list of symptoms and a series of conditions. I can do this!