Spreading Awareness: Educating Ourselves and Each Other

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’.
-Eric Schmidt

5 thoughts on “Spreading Awareness: Educating Ourselves and Each Other

  1. Pingback: Welcome Osteonecrosis/Avascular Necrosis Sufferers | Osteonecrosis (Avascular Necrosis)

  2. Please don’t ever take this website down! I don’t know what I would do without it. Thank you for sharing so much information, especially the tests recommended by Dr. Glueck.

  3. I have read the blog it does give some information but it does not include what you do for pain, how you deal with feelings, and the change of walking and disability, people’s misconceptions or lack of support, and the love and support received. I have been doing physiotherapy for myself, and hope to make healthy choices while this happens to me. I wonder what you do for pain and healthy choices are you in a chair etc. I have chosen to use the steamroom at our pool for pain and it allows me a chance not to medicate like most. I am getting more crippled in my leg and arm and now my other hip is starting to hurt. I have the best surgeon in the province.

    • I have been taking tramadol on and off since I was diagnosed in 2011. But I have also been able to live without taking anything for up to a year at a time. I manage my pain by treating my body differently than many people my age would. It took me a VERY long time, years, to come to terms with the fact that I have a chronic condition. I didn’t always respect my body the way I should. I would try to push myself to live life without limitations and then I would not being able to leave my apartment for weeks because of debilitating pain.
      I never stand for more than a few minutes at a time, I don’t walk more than a quarter of a mile, ever. I have a disability placard. I exclusively swim for exercise. I try to be as non weight bearing as I can be while still living a “normal” life. I was even able to have a baby, who is now 3 (I was pain free all during my pregnancy). Sometimes I use a wheelchair if I have to go any distance (ie. in airports) and I use a cane if I know I’m going to be going somewhere and I might not be able to rest for long enough periods. My disease stabilized. It did not continue to progress. My pain comes and goes but as shown on a recent bone scan it has not reached a further stage and has remained the same for 6 years. I still take blood thinners everyday. I also live in California where medical marijuana has been legal for a while and I have taken it in different forms to help with pain and anxiety. Marijuana contains CBD which is a natural painkiller and can be taken without any of the psychotropic effects that make people “high”. I have psychotherapy once a week, which has helped me come to terms with a lot of my fears. Some days are harder than others, I have leaned on friends and family who have been compassionate and understanding. I’ve also been a member of some support groups on line. The person I am is always evolving because I’m never quite sure what tomorrow will bring. I try to make the most of today. I have recently been thinking about going to a homeopathic doctor. I have written on here in the past that surgery has never been an option for me because the disease is in a rare place in my body and was caused by multiple clotting disorders and not by the use of steroids or repetitive trauma or other reasons that cause AVN.

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