Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.
In short no it was not , in fact I felt it my obligation to do so ,as now I have a rare disease that often leaves a patient confused,scared , frustrated and with limited options. Or so some in the medical community want you to believe.
I came home from the Ortho Specialist feeling scared, emotional and in a form of shock.
I went to get the results from my MRI , to see if it confirmed what my PCP thought weeks earlier sounded like a meniscal tear. So I could get a plan of action on repairing it.
My appointment was to go over treatment options , down time etc… So I could get back to work , back to living pain free life and back to no longer being limited in mobility.
When I found out I did have the tear and also Osteonecrosis and Patellofemoral Crepitation ,and nothing could be done or would be done but to just live in pain with many limitations and now unable to return to work and wait for my knee to collapse, then they would replace the knee …..
say what !!
That was a lot to absorb.
I wasn’t given a lot of information about Osteonecrosis just that it was caused from lack of blood supply to the bone. And since I had trauma to the knee hence the meniscal tear. That’s probably what caused the Osteonecrosis.
So my main question was why not just repair the tear ? Or remove the menisci all together ? I mean athletes have injuries and treatments all the time? They play contact sports, I just want to get back to my optical career , fly and visit my family , get back to exercise and hike on the weekends.
But I was again told this isn’t an option. At first I was told to limit my weight bearing to slow the progression, then I was told I could exercise and speed up the progression leading to a knee replacement. But at my age 51 at the time it’s best to put the surgery off as long as possible. As you can only have so many joint replacements.
After feeling anxious for the next week or so. And not being able to find much if any information about Osteonecrosis related to trauma at the library.
I would do research online I came across nonf ( National Osteonecrosis foundation ) I read all the ways you can get Osteonecrosis from trauma like mine , to corticosteroid use, abuse of alcohol, to cancer patients receiving chemo. I mean that’s a lot of people with different factors and yet we can end up with the same disease?
I knew I had to make an attempt to do something.To reach out in ways not just by the support group, and raising awareness but now as an advocate and activist.
I want people to know you have options if it’s caught early enough you don’t have to live in constant pain 24/7 waiting until your knee,hip, talus,shoulder or whatever collapses.
I was excited , nervous and learning about my own disease while I educated others as well.
So after 2 years it’s gone from on going awareness to now include advocacy and activism as well. I write to the FDA , start petitions for more research, better treatment options that can be affordable to patients.
And I am all in.
I want people to know what Osteonecrosis is ,all over the world.
I want people to learn to be their own advocate. Learn about your diagnosis, research various treatments.
Let’s face it the road to a diagnosis especially an accurate one can sometimes be long and complex, for adults and children . But don’t we also want to know the root cause? If there is one?
Can it be caused by clotting issues? Family history, studies show show in some cases it can.
Some Doctors I spoke to never heard of that before: but research it and its true.
I want people to have as much information as possible so they can go with what’s best for them whether it’s a joint replacement, stem cell injections, prp injections, checking into the vascularized fibular graft microsurgery, people need to know their options.
I also think it’s a shame doctors don’t plan what to say to patients when they give them a diagnosis of Avascular Necrosis/Osteonecrosis.
I understand doctors especially specialists are very busy, but take some time with your patients when you are giving them news that is life changing.
If I was a doctor giving a patient the diagnosis of of AVN/ON I would say
After reviewing your MRI I have determined yes you have a meniscal tear, unfortunately the trauma your knee experienced has caused you to also have a disease/condition called Osteonecrosis, Osteonecrosis is caused by a temporary not permanent loss of blood supply to the bone.
Now because this was trauma related we are fairly confident it won’t progress to other joints as it could if you took corticosteroids say for asthma and other conditions. That being said I would like to do further checking to see if you also have an underlying cause such as Factor V Leiden, MTHFR or other genetic clotting disorders that could have also caused the Osteonecrosis.
Here are some treatment options such as we can try prp injections, or stem cell injections but for that you would need to go to someone that specializes in these injections, we can can also try to repair or remove the meniscus to help ease some of the pain, none of these are cures or certain they will work but they are options. Lastly we can just wait until the knee collapses and schedule you at that time for a knee replacement.
Other options could be to help you with the pain and inflammation is eating more foods in your daily diet.
If a doctor would have taken the time told me this the day of my diagnosis, I would not have left the office feeling defeated.
Because surgery isn’t the only option. And people need to know this.
So yes my choice to be an advocate was very easy. Patients need to know what options they may have.
You empower the patient this way vs leaving them feeling hopeless.
Because no one should ever be left without hope.