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.
*If you are interested in sharing your Facebook group with my readers please email me at firstname.lastname@example.org
Books About Avascular Necrosis/Osteonecrosis:
*This blog post contains affiliate links.
Thank you Deborah and Cheryl for the education. Very motivating interview as in do something for someone else no matter your own situation.
Thank you for taking the time to read this interview. I hope it finds its way to someone who may be dealing with this disease and let them know they are not alone.
So many invisible diseases out there. I have arthiritis myself. It’s not fun. Nice to see you back doing the #AtoZChallenge
I have arthritis myself I know what you are talking about. I am glad to see you back as well. Your first AtoZ already has me laughing!
The hardest thing when you’re faced with a disease you’ve never heard of is finding out more about (what to expect, treatments that might help, etc.). It sounds like Deborah has turned her disease into a thing that could benefit many more. A great start!
A to Z Challenge Co-Host
The Sound Of One Hand Typing
I agree with you, Deborah is a warrior. She is very compassionate and a great asset to those dealing with this disease.
This isn’t something I’m overly familiar with (at all) so thank you for sharing this. It’s through posts and support groups like this that others, in a similar boat, can benefit and awareness can be raised. x
Never heard of this disease until I started following Deborah’s blog. I agree that people certainly can benefit from support groups.
I’ve shared this on the InvisiblyMe Facebook page, I hope that’s ok 🙂
Absolutely ok! Thank you for sharing.
Very helpful info I plan to pass on. Thanks!
Thank you for the informative education on something I have never heard of. Support groups are such a wonderful outlet for people these days. Imagine, generations ago, they just didn’t talk about anything – no such support groups. Sad.
Support groups can be such a comfort. It is sad to think that years ago people suffered in silence over things that they were afraid to talk about. Thank you for taking the time to read this blog post.
Hello Cheryl………It’s been awhile since I have checked in; for both your site and mine. I hope to catch up with your blog this month………especially some back reading to Musical Mondays! Good Luck with the A-Z Zulu Delta
I’ve disappeared for small amounts of time myself. Glad to see you back! Good luck with the challenge, as well.
I can understand the frustration of waiting for a diagnosis….my hubby has been waiting ten years.
Perspectives at Life & Faith in Caneyhead
Hopefully your hubby will get a diagnosis soon. I’ve been waiting for years myself, it’s no fun!
Always interesting learning about a new disease and be thankful one doesn’t have it. Keep up the good work.
People often take their health for granted. Thank you!
This is the first I’ve heard of this disease. Thanks for the education! Time to start getting into better shape.
Debbie @ THE DOGLADY’S DEN
Latest post: Azzurro: Going AWOL in Switzerland
I hear you about getting into better shape!
Thank you Cheryl for the honor of the interview and helping me raise awareness and Thank You all for taking the time to read it .
You are more than Welcome Deborah. THANK YOU for all you do to help those dealing with this disease. Please don’t hesitate to email me if there is ever anything else I can do. Take care!
[…] A Is For Avascular Necrosis/Osteonecrosis Support #AtoZChallenge […]
What a touching interview. It’s nice to have support.
Thank you. It sure is nice to have support.
I agree 100%.
Thanks for all you’re hard work Deb.. I struggle with Avn as you already know me and I received you’re booklet ,down in Arkansas,, thanks we need to know how we can help you ,by sending a donation to send more books out? You’re friend Eric
Thank you. ❤️
Oh Eric thank you. I don’t take any money from members because I am not a non profit however I have been hoping that maybe people can place an ad in the back of the booklet either promoting their business or even an awareness post.
It will then always remain in the booklet and all money goes to making more booklets.
Anyone can contact me if interested
Medicine is such a wide field that it is tough to know about every rare disease as frustrating this is for the individual patient. However I find it unacceptable to ignore the sufferer’s complaints and just dump them onto the next specialist. Also it seems to hurt their pride to say “I don’t know how I can help you.”
A friend’s son has been diagnosed with Nieman Pick Type C, also one of many rare diseases, and he has been fortunate enough to have gotten accepted into a study where he is getting an experimental drug treatment.
Good luck with your support group – so good to know there are people out there who understand!
Thanks for sharing!
Sometimes you get too many doctors in the mix. And they don’t agree with each other! It can be quite a frustrating experience, waiting for a diagnosis. Glad to hear your friend’s son will be getting some help with his condition. I hope the drug treatment is a success. Thank you for visiting and for taking the time to comment.
Stories like this are one of the wonderful things about the Internet. I knew nothing about this disease. So great that you chose this venue to highlight efforts like this. A wonderful start to the challenge!
The last two challenges I did non-profit organizations. I was thinking of what else I could do along those lines. Then I had a light bulb moment….Facebook support groups. Thank you for visiting and commenting.
For all the bad one can read about social media, blogging has really shown me so much of the good it can do and how much it can help & bring people and communities together.
I’m glad I don’t have a rare disease. Mummy takes me to the vet if I’m ill and Dr Sally nearly always fixes things.
Thank you for visiting my blog
Kevin at George’s Guinea Pig World
You have a great mummy and doctor who take care of you. Together they will make sure you are just fine…
Thank you all for taking the time to read about it.
Did you know our pets can also get Avascular Necrosis also? Any creature with bones and joints can get the rare disease not just humans. 🌷
I know that animals can often get diagnosed with things that humans do. Never thought about rare diseases though.