Being diagnosed with a rare disease, I have been told, is tough! There usually is little to no outpouring of attention or research money. Many doctors may not be educated on a certain rare medical condition which often causes patients to be misdiagnosed. Those suffering often go years without an actual diagnosis.
There are about 7,000 different types of rare diseases with new discoveries every day. In the United States alone there have been approximately 30 million people given the diagnosis of an uncommon medical condition.
Avascular Necrosis/Osteonecrosis is one of those rare diseases and today I am happy to introduce you to the creator of the Facebook support group, Avascular Necrosis/Osteonecrosis Support, Int’l
Please welcome Deborah L Andio
Hi and Thank You for having me I’m honored to be selected.
I’m Deborah L Andio and I am a former optometric tech and apprentice optician and past former d v shelter manager, now blogger/ health advocate and activist as well as a patient /and your cheerleader
I am 54 years of age I am a wife, mom, and grandma
I am the author of a small yet informative booklet for rare disease, called Avascular Necrosis and what to do and expect once you’re diagnosed from the patients perspective.
I also am learning to lessen my pain and inflammation by changing to a mostly plant based diet. As well as supplements and essential oil.
As like many do over the years I let myself go a bit with work and stress and when I would come home I was exhausted, and sure didn’t want to do any aerobic exercise. I wanted coffee and to sit and relax with my husband.
We would hike on weekends. And when we did (when we didn’t have to work) 2 decades and 38 pounds bigger I decided after being diagnosed with hbp and osteoarthritis it’s time to get serious and get back in shape.
I was committed and honestly I was loving it. I was getting tone again dropped some weight which motivated me even more. And one day in September 2014 during an intense DVD workout I felt this stabbing sharp hot pain in my right knee like it was struck by lightning. It almost took me to the floor and I did cry. I called my PCP the next day. Went to see him and he did The McMurray Test and said he felt I tore my meniscus and wanted an MRI, got MRI which confirmed it and off to PT( physical therapy).
The pain was so intense while at pt I cried every time I came home. Finally I told my former PCP in November I can’t continue this. My leg also felt like I had a tourniquet above and below the knee it still does. I was sent to one Ortho after another some were conflicting in their opinions.Which led to more opinions.
Long story short I was diagnosed a couple months later with Avascular Necrosis aka Osteonecrosis aka Dead Bone Disease which is caused by lack of blood flow to the bone or joint. Causing the bone to eventually die and collapse leading to a joint replacement.
I have been doing things to help my avn pain while battling other diagnoses besides osteoarthritis on top of them like
I mean wow
If you want to know more
Chronically Grateful Me
Please tell the readers a little about the group.
My support group is for all people worldwide diagnosed with Avascular Necrosis or if their family members have been diagnosed and need support, understanding and education about the disease, howto find a decent doctor and treatment options available. I didn’t want anyone to feel as alone or afraid and left guessing like I did. That’s why I started the group. It’s so rare it didn’t even have a cause ribbon so I made one also which has been a big success
What inspired you to create this group?
Well what inspired me to create the avn support group called Avascular Necrosis/Osteonecrosis Support Int’l was the fact that when I was diagnosed I had so many unanswered questions the orthopedics I saw blew off my questions acting as if I was taking up to much of their time wanting answers. Ortho’s would refer me to hematologists, rheumatologist, who did nothing then refer me to vascular doctor who again did nothing. I wish I could get all my co pays back for the ones who did nothing. They had absolutely no action plan but let’s wait until your knee collapses and then we will do surgery and the hell with your pain. That was unacceptable.
In the beginning I cried in frustration, worried about my future will it be “normal” and I had fear of the unknown. I wasn’t dying but some of my bones are. Will I ever get my career back? So many questions and very few experts to answer them. People deserve to be treated with respect and dignity when diagnosed with any illness but especially a rare one.
What would you like this group to accomplish?
I would love to have a non-profit someday so we could do fundraisers, like fun runs, bikeathons, sale of talented artists who donate their works of art to help the cause to raise money and help provide meals to patients for a week to their home after surgery or to get them to appointments. I have so many great ideas, but it costs between 8-10 thousand dollars to have a non profit organization. So for now that’s not doable.
I want us to make Avascular Necrosis/ Osteonecrosis as known as say Heart Disease, Cancer, Lupus, Arthritis. I want A National Avascular Necrosis Awareness Day. I would prefer an awareness week but I would be happy with a day.
I think My AVN group has accomplished a lot already as far as raising awareness. Many of our members participated in a few awareness videos on you tube. I wrote a Booklet about avn and we give them to members free and often send them two so they can pay it forward and give one to their ortho or PCP
My goal is to get Doctors or anyone that would like to help to fund it via a sponsor ad in back of booklet for a small fee so we can continue to print the booklets. All money goes to more booklets as it cost about 1.40 each to make them plus mailing the all around the world as it can be costly. But it’s needed.
Support groups can play an important if not vital role in coping with and overcoming fears and anxiety when diagnosed with any rare disease/ disorder. We understand when family and friends often don’t.
Organizing and maintaining a strong support group does take time and effort. And it’s a team effort.
I am Blessed to have excellent moderators helping me. A special thanks to
I can’t monitor the group 24/7 but I have the utmost trust and faith in the people I appointed.
And One of the Moderators Lori is such a great help.
She helps me mail out the booklets to members that want them, we mail them worldwide. We do this at no cost to the members.
Honestly I love every member of our group. We all try to raise awareness anyway we can. Some buy awareness bands with their own money and give them to members just so we can raise awareness.Some do vlogs, some post new info or fb live updates. They are from several countries and cities from Australia to Zimbabwe.
How cool is that !!
So we must be doing something right
Thank you Deborah for taking the time to educate us on this rare disease.
Click on the link to find this Facebook group – Avascular Necrosis/Osteonecrosis Support, Int’l
Click on the link to visit the website – Chronically Grateful Me
*This blog post is part of the Blogging From A-to-Z Challenge (April 2017).
*The Internet is a useful tool for creating online support groups. Please lend a helping hand by sharing this blog post in the hopes it reaches someone who may benefit from this group.
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Books About Avascular Necrosis/Osteonecrosis:
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