I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but also because that is what I call, “rather rare.”
Imagine, if you will, that 8th grader, well into the school year, dealing with all of the middle school insecurities, suddenly finds out that he has this rare “thing.”
And no one knows what it is. Let that sink in a minute. Imagine you are the 8th grade student getting all sorts of awkward questions at school and no one understands. “What is it?” “They think it’s called an AVM.” “What’s that?” “They don’t know.”
“Mr. Smith, I need an excused absence form. I’m going to not be at school next week,” “Oh why….. Oh yeah, that thing.”
“That’s right, at a time in my life when I’m like 99% of all American middle schoolers and I just want to fit in, I don’t fit in.” If I had surgery for a broken finger, I’d fit in. We talked about the whole issue of fitting in and it went much longer than the paraphrased snippets I’ve got here.
“But I’m ‘rather rare.’ In a world full of Quarter Pounders, I’m a veggie burger. That’s rare.” But that’s the beautiful thing.
If the AVM Survivors Group had been up and running, this member would have been able to tell me his story without the painful memories of not fitting in. Let’s face it, not fitting in gives a patient and their family a whole additional area of pain.
I am pleased to tell you about something that we are excited about. McGill University near Montreal is a very involved and comprehensive teaching hospital. They have a “Rare Disease Interest Group” that was formed by med students for med students. I could take the next three hours and tell you some of the things they are doing, but I won’t.
Their “Rare Disease Interest Group” has an overriding goal of helping those who are suffering from rare diseases to get the support and connections that they need. Because I think that we can all agree that when there is support and connections, the outcomes are almost always better in some way.
We are working with the RDIG to coordinate these possibilities but it is exciting and we are truly grateful for both the work McGill has already done and is doing and the partnership which could truly help both organizations. Imagine, a medical field where the staff is concerned about the whole patient. The possibilities are endless.