I have decided to take part in my first open water swim in Lake Windermere on 9th of June to raise money and awareness of Ehlers-Danlos Syndrome (EDS). I am using swimming as a part of my physio and rehabilitation specifically for my shoulders. 

I myself have Hypermobile EDS (hEDS). It has taken me a number of years of struggle to get an official diagnosis. After years of mis-diagnosis, I went to see a specialist in London last July and had the relief of finally finding out what was wrong. 

Ehlers-Danlos Syndromes are a genetic disorder in which the structure of the connective tissues is abnormal due to a gene mutation. this results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms. The effect on the body is widespread and not limited to one body system (ie. Joints, Skin, Internal Organs) 

Me personally

As stated above, my official diagnosis is hyper mobile EDS or type 3. My joints are hyper-mobile which means the tendons are very stretchy and my arms bend back the wrong way. I have struggled for a number of years on and off with a lot of digestive problems as well as  pain and feeling tired. I got really sick again about 18 months ago with vomiting and pain which has caused me to have to give up university and studying that I loved. Currently I am unable work because of my condition and the toll the struggle in dealing with this is taking on my mind. On an average day I currently have to take 25+ tablets to treat my symptoms and attend weekly physio sessions.

I suffer with:

• Digestive problems - I have a form of paresis in my gut which can cause me vomiting and difficulty digesting food. This has resulted in me having to be on a liquid diet at times, I suffer with food getting blocked in my bowel and have intolerances/allergies to foods such as gluten and lactose.
• PoTs - this effects heart rate and can cause dizziness on changing posture or standing up still for prolonged periods of time.
• Frequent subluxations - basically my joints, shoulders especially, partially dislocate and pop back in. This can be extremely painful and can even happen in my sleep. They also prone to seizing up and my hands and finger can be quite painful and stiff. 
• Prone to injury (frequent sprains etc) and bruising/skin cuts very easily. My hips hurt most of the time especially after walking for more than about half an hour.
• Chronic pain - general pain for no apparent reason pretty much widespread.
• Chronic fatigue- I get tired after carrying out the most mundane of tasks, feels like flu ache all over. 
• Hiatus hernia - heartburn and this unfortunately means I can't take certain painkillers such as ibuprofen. 
• I have a problem with local anaesthetics such as at the dentist. Problem being they don't work.
• Problems with anxiety and depression.

I want to raise money for the charity that helps so many with the condition, but just as importantly raise awareness. 

This charity helped me in finding diagnosis criteria and putting all my symptoms together and understanding a lot of different issues I didn't realise could be connected. I've now met other people who suffer the same condition as me which has been refreshing and helped me to understand I'm not alone. They give advice and support to those who need it and are helping to increase awareness and understanding of the condition. They are interested in research to help improve the lives of those diagnosed currently looking into changes in diet to improve symptoms.

For more information on the different types of conditions visit:

https://www.ehlers-danlos.org/