I am a member of several Osteonecrosis (Avascular Necrosis), Factor V Leiden, MTHFR and Blood clotting support groups on yahoo and Facebook. I often write about my blog and post it in the different groups and hope that I can make a difference.
Since being sick I have felt a strong pull to be an advocate and a voice for people with ON (AVN) and my clotting disorders. However, I worry that, although I share my blog, people won’t read it.
When I got my definite diagnosis of Osteoncrosis (Avascular Necrosis) I read everything I could on line. I was unrelenting in my search for answers and help. Even though I was very depressed at the time I kept having faith that the next doctor I would meet with, or talk to would have answers.
I did speak to some helpful doctors, but to be honest through my research on the web is where I really found answers, help and where I found Dr. Glueck. Without Dr. Glueck’s blood work up I would never have found out that I have the eNOS mutation, high homocysteine levels, one copy of the A1298C MTHFR mutation and the 4G variant. (I already knew that I had Factor V Leiden, but no one had told me about the risk factors related to this disorder). If I hadn’t know about these clotting disorders I wouldn’t be taking the supplements I’m on or be on heparin, which is hopefully going to help reverse my ON(AVN). I’ve seen tremendous improvement since starting my course of anticoagulants.
At first I was very overwhelmed by all my clotting disorders, I didn’t know where to begin my search to understand them. I spent hours reading about each mutation and it wasn’t until I thought I had a good idea of the biochemistry behind them that I posted about them on here.
Up until I was diagnosed with something rare like Osteonecrosis (Avascular Necrosis), and found out about my clotting disorders, I always implicitly trusted every doctor I met. To be fair I have met some wonderful doctors like Dr. Glueck, my rheumatologist who took the time to read Dr. Glueck’s research, and my newest orthopedic specialist who was interested in learning more about ON (he only has one other patient with it).
However, by another orthopedic specialist I was mis-diagnosed with having bone cancer, the first orthopedic surgeon I met said there was no correlation between my clotting disorders and ON (AVN), multiple radiologists misread my MRIs. I was told I had osteoporosis because one radiologist didn’t recognize ON(AVN) on an MRI. My hematologist hadn’t heard of half the blood work I was tested for and told me she didn’t, “have time to learn more”.
This all lead me to believe that it was my duty to educate myself as much as I could.
I often see that people from India, Australia, the U.K., South Africa, Mexico and Singapore read my blog and I hope that, even though they can’t be directly treated by an American doctor, that they still feel comfortable printing out the research I post on here and sharing it with their doctors.
When you have something rare wrong with you, you have to educate yourself and then spread that knowledge with others who are in the same boat as you.
I want everyone to come together, tell their stories, talk about their doctors. Please even if you live in another county. You don’t know who you are going to end up helping!
- ‘We have an opportunity for everyone in the world to have access to all the world’s information. This has never before been possible. Why is ubiquitous information so profound? It’s a tremendous equalizer. Information is power’.