Sophie's Story

What have you done to raise funds for Mast Cell Action? 

My husband and i did a 120km trek from Portugal to Spain.

How is the challenge going so far? 

Good! We are doing lots of long walks and not too many blisters so far. It's really about pacing and building up slowly. We did a 17km walk on Sunday and plan to do a 25km walk this weekend.

What is your link to Mast Cell Activation Syndrome? Can you share a brief history of your story with us? 

I went from running half marathons, blacked out one day and couldn't stand for 5 years! I have become alergic to almost all food and was eventually diagnosed with EDS, PoTS and MCAS. In a bizarre turn of events, my husband became very unwell, having all sorts of allergic reactions. Eventually he became unable to eat and was allergic to exercise. He was ultimately diagnosed with MCAS & Chronic Urticaria & Angioedema. Now relatively stable, this trek marks a huge milestone. At my illest, 30 was the goal age. I turned 30 this year so we thought this was a great way to celebrate!

Why did you choose Mast Cell Action? What impact has Mast Cell Action had for you? 

Where this condition is so poorly understood, diagnosed and recognised, it's vital to fund Mast Cell Action so that hopefully in another 5 years time there will be wider understanding and NHS treatment available. 

What message would you like to share with the MCAS community? 

Just keep swimming! A decade ago i couldn't sgtand or eat  and now i am doing the biggest physical challenge of my life. It's been helpful mto have an ambitious goal. Fundraising makes me feel like i'm making a difference and giving back. Hopefully, it will help the 'Sophie's' of a decade ago who are sadly just starting their journey. 

What would you say to people outside of the community? 

Don't judge people on their appearance. Treat everyone as though they might be going through something serious - throughout my diagnosis the biggest 'issue' was not looking ill. We need a more tolerant society who understand invisible illnesses are as rea;. debilitating and as serious as a broken bone. 


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