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Carolyn's Story

Carolyn's Story

The date was the 13th November 2013, a date etched in my mind forever. We were heading towards Sheffield, a city my family had been to many times. It was a beautiful day with crystal clear blue skies, only interspersed with a few plane trails crisscrossing like a game of noughts and crosses.

Although a regular visitor to Sheffield, it was to be my first visit to the city's children hospital and I was really hoping my last. Sheffield Children Hospital is home to the Ehlers-Danlos Syndrome National Diagnostic Service, were they diagnose children and adults with suspected complex EDS.

At 27 years of age, I was attending the hospital to meet a specialist team of doctors to have a test for Vascular Ehlers-Danlos Syndrome (vEDS).

The reason for the test was my father and one of my brothers was diagnosed with vEDS in the preceding months. I certainly didn't want the test, probably because I didn't want to know the result, but I felt I had to find out for the family.

I don't actually remember much about the appointment, although I clearly remember being very nervous and scared. I remember a blood test and a thorough examination of my body, with even pictures being taken. It was all so surreal. Then I sat in front of the doctor and a genetic counsellor, it felt that their eyes were staring straight into my heart and soul. I was so numb.

Then I heard the words I was so dreading, "Carolyn, our initial examination lead us to believe you have vEDS but the blood test will give us absolute confirmation". Deep down I knew what the result would be, even before I got to the hospital. Sometimes we just know these things and unfortunately that is the hand we are dealt.

Before my appointment ended, they spoke about the risks of me having children and the possibility of passing the condition on to them. 

They also told me of other options for having a child but I decided there and then that my future life would be childless. There was no way I was bringing a child into this world with a chance of passing vEDS on to them. It really wasn't worth taking that chance. 

It broke my heart making such a big decision and I'm not afraid to say, I cried a lot that day.

Now it was a waiting game for the blood test results and I really detest waiting. Even though we pretty much knew what the results would be, there was a painful process to follow.

I tried so hard to keep it together, knowing that life is never going to be the same again. Nothing had changed but everything has changed.

"The Diagnosis That Broke Me But Ultimately Made Me Stronger

The dreaded phone call came on the 5th January 2014, two months after my hospital appointment. It was from a Sheffield EDS team member. The voice at the other end of the line said, " Carolyn I'm so sorry but you have Vascular EDS. I wanted to call you as soon as the result came in, so you didn't have to wait. Are you ok"? All I could think to say was "thank you" and hung up. I was broken and felt so empty.

What would my future life become, who would I become and who was I right now? Am I still the adventure seeker Carolyn or the dying Carolyn? A million questions, with no answers.

Three days later we attended the children's hospital for the official diagnosis. By now I was angry but still really scared. The doctor explained the do's and don'ts of vEDS.

To my despair my love of hills and mountains fell into the don't section. Sitting listening to the doctor was like listening to someone taking part of your life away, piece by piece. A part of me died that day and again I was in a flood of tears.

I was struggling to come to terms with the condition but for the sake of the family I held it together. However deep inside me I was falling apart. I vowed to stay single to the day I die, not willing to let someone in to my life and for them having to deal with my vEDS. I even considered suicide several times. To me my life over and not worth living.

Fast forward to November 2018. Since my diagnosis in 2013, I fought hard to carry on as normally as possible and not to give in lightly to this dreadful condition.

I've hiked/scrambled hills and mountains, swam rivers and lakes, experience the joys of abseiling, visited the beautiful Scandinavian country of Norway with temperatures close to minus 15c, ticked many items off my bucket list, like stand up paddle boarding and own two gorgeous dogs which fill my life with absolute joy.

My life is wonderful and I never gave up, even when that's all my soul wanted to do. I live for every sunrise and sunset, knowing that when my last breath comes, I will of have had the most amazing beautiful life.

Not everyday is a good day but my perfect days get me through the darker ones.

I will be forever grateful to my wonderful family and friends, without who I couldn't of got this far on my journey of life. This applies equally to the brilliant vEDS family, which without them would of been a long, hard and lonely journey.

I am fragile but I truly cherish every single breath and my fight for life is stronger than the condition I live with. I fight inside my head everyday to stay positive and to hope that one day, may be not in my lifetime, that future generations will find a cure for this cruel evil syndrome and that no one else will have to live with this condition.

I'm a Vascular Ehlers-Danlos Syndrome warrior and the condition will not stop my adventures; only enhance the adventures I undertake. Therefore, I will conclude with one simple statement that I now apply to life, "I'm dying to live".
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