How would you describe yourself? A VM Patient

Where are you located? (State, Country) England

What types of vascular malformation do you (or the person you care for) have? FAVA

Which part of your body is affected by vascular malformation? (Please select all that apply: Legs/Feet

What has your VM journey been like so far? How has your VM journey evolved over time? Diagnosed as a child around 11 (I’m now 44) with a haemangioma, suffered from years of pain during my teens, wore a lot of compression bandages during this time so I stood out and was often teased. I could not play sports. Doctors advised to just get on with it as there was not much they could do. Referred to specialist in London who advised the same. Fast forward to my late twenties when I had several sclerotherapy which offered some temporary relief, however when I became pregnant with my daughter my AVM grew further and became incredibly painful and at finest I was unable to walk. In the last ten years I have been referred to another doctor who has given me sclerotherapy with bleomycin which has had only very temporary relief. In the last two years doctors have diagnosed me with a FAVA AVM and I had my first round of electroscleotherapy last year, which did not offer any relief. However given my AVM is so large they think it may take a few rounds so I am hopeful and have my fingers crossed.

How do you/did you cope during hard times with your VM? I have made changes such as now driving an automatic car and left my community job for a one that is a bit more desk based. I have family support. Husband, sibling, parents and friends

If you could share a piece of advice for others with a similar condition, what would you tell them? Don’t be scared to tell your employer, let them help you!

What is something you learned about yourself throughout your journey? That I didn’t like relying on people, now I let people help me.

If you chose to share your VM story publicly, please share information about yourself that you want to share. Shell, 44, from the UK