November 25, 2020

Living with a Rare Disease

This is my story…

I'm Tammy, 34yrs old, and I live in Leicester in the UK.

I have a Rare Disease called Eosinophilic Gastroenteritis which I believe to be genetic.

I try to concentrate on the positives living with this illness rather than the negatives but let's just say, it isn't easy living with a rare disease that not many people understand or know about, but that's what makes me unique.

Living with this illness isn't easy at all and I'm in pain most days and the flare ups can be really tough for me, physically and emotionally. I’m on a lot of medication which doesn’t cure the disease, it only enables me to function day to day. This illness affects how I live on a daily basis and I have to be careful with what I eat, drink and which perfume I wear incase of allergies. 

My symptoms started in my early twenties when I was working around children a lot and found myself getting frequently ill. At the time doctors thought it was Irritable Bowel Syndrome (IBS) so I didn't think too much of it. I just sort of carried on, but around the age of twenty three the pain grew worse and worse and I ended up staying in hospital for long periods of time. I was always so sick and in constant pain especially when my stomach was very bloated. I tried to eat but found it very difficult so it’s hard to put on weight.

I spent just over a year being in and out of hospital and having lots of different procedures, scans and tests, while I was vomiting continuously. I finally got a diagnosis, I was relieved but also scared. I had no idea what the future held for me.

Ten years ago, due to my long bouts in hospital and being in constant pain with sudden flare ups, I lost my job, which is very disappointing for me as I’m young and I like to work.

The upside to this is that I have found a new empowering mission in life. I started a blog/page about myself to support and help others and I also share other personal stories about Rare Diseases. I hope it helps to raise awareness and makes them feel that they aren't alone.

Thank you, I hope sharing my story will help others. 

Written by: Tammy Blake
I'm 34yrs old and I have a Rare Disease called Eosinophilic Gastroenteritis. I blog about myself and share other stories to help people with Rare Diseases to feel less alone.

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