FAVA: the online community

After being told I have FAVA, I set off to research what this meant.

I knew it was a rare disease. And I knew that if I have it, I need to understand what it is -- as much as possible, with me not being a doctor.

According to Boston Children’s Hospital, a hub of FAVA research, fibro-adipose vascular anomaly (FAVA) is a rare, and painful, vascular anomaly in which a significant portion of a muscle in a limb is taken over by tough, fibrous, fatty tissue. FAVA can also cause abnormalities in the veins or lymphatic vessels.

The hallmarks of FAVA are:

·       Unrelenting pain

·       Swelling and limb enlargement

·       Progressive functional limitations

·       Venous clotting

·       Joint contractures (stiffness, limiting movement)

·       Frequently misdiagnosed as a standard venous malformation due to its rarity and overlapping traits

Yep, yep, yep, yep, yep, and yep.

My early research showed that mainly children are diagnosed with this ailment.

And I was 49 when the pain really exacerbated. So, I made it my goal to find other adults who have been diagnosed with FAVA.

That’s how I found Project FAVA, and I couldn’t have been happier to find them. At last, a place that could help me explain what I am dealing with. Yes, they came about because of a child’s diagnosis, but they are a hub of information.

And they led me to an international online community group for people with FAVA and their family members.

It was here that I first read posts by other adults. Which was reassuring in an awkward way -- I don’t wish this pain upon anyone, but it was amazing to know I’m not the only one who got the diagnosis as an adult.

As of writing this post, there are 249 members of the online group. Again, so amazing to know there are others.

According to what I have read, there is no exact total number of global cases because FAVA is an extremely rare condition, and was only named in medical literature in 2014.

There is no one treatment for it either.

Thank goodness the online community exists. We might each be a data set of one, but, for me, knowing there are others who understand what I'm going through has been a huge relief.