Rare Conditions Stink: But Being A Patient Leader & Advocate Is An Honor

Here’s what really stinks about having something that is called a rare disease/disorder

First you probably won’t find it in any regular medical textbook or learn about it in detail in any medical school.

Really ? Trust me I have looked I stumble on a paragraph here and there, but even it stinks as it lacks real information ,studies.

Secondly you probably won’t find any books you can buy that really tell you about your condition:

So I wrote a booklet it’s about 15 pages and I’m in the process of making it larger.

And ya know what really stinks is –  good luck finding a support group in your local home town.

I’m trying to change all that. I will get into that later.

And because you gave is a condition that in not that known , heard of  or taught about , what stinks is it can take many years before even figuring out what is the cause of this condition.  

So it will be classed as idiopathic – There may be years of pain low moderate and severe possibly, possibly blood samples, many doctors that don’t listen to you or that just don’t believe you’re in pain , test after test referral after referral and many give out these clueless stares at you on behalf of specialists before even being diagnosed with a rare disease.

You know they are probably thinking why was I the one to get this patient…I can’t help them he’ll I don’t even know what they have or how they ended up with it.

Because your disease/disorder is rare, you just cannot be an average patient getting treatment or physical therapy.

Usually you end up playing the role of doctor and educator when visiting family or friends hell even seeing some healthcare professionals.

Sure you’re grateful for any opportunity to educate and raise awareness yet it becomes so damn frustrating when you see a medical professional and it appears you know more than they do.

Which brings up the next issue that stinks  – finding a good educated medical professional who knows, really knows about your condition and has actually treated more than a handful of patients in their entire career and one that doesn’t just try to use you as an experiment unless I want too.

Or worse just dismisses you and your concerns and questions.

What I also find frustrating and this really stinks are the doctors that are closed minded, just because they don’t know or understand my condition they are not open to alternative or newer forms of treatment.

I mean it’s not like they are paying for it. Nor did they look any of the research up that I have mentioned or left for them on more than one occasion. They even have the nerve to get passed off when you say you want and will try something new.

There are many things that stink about having a rare condition : But there is  the one thing  that doesn’t  stink about being rare …..  It’s the community we have.

I have a FB support Group for Osteonecrosis- and there are only approximately 12-15000 new cases a year in the USA diagnosed and 50,000 worldwide.

Because we are rare, we stick closely together. My rare  community  is fantastic— both patients and loved ones are fantastic and like our own family— they are the glue that helps me and others when we feel pain, become overwhelmed or just suffer the loss of our mobility, our career because of the condition, a significant other leaves us because they cannot take always seeing many of us in pain or unable to work.

I never planned on starting the support group but after all the things I came across when I was diagnosed I wanted others to have a place of hope, education and information and FB gave me that platform.

Our group now has a booklet we give free to all new members its mailed to them worldwide:

We have a Nationwide Directory with doctors that are educated and experienced in treating Osteonecrosis and some help find out the cause. Our group is working on a worldwide directory as well.

We have guest speakers (orthos, naturopaths, doctors that preform prp and stem cell injections)

I am very proud of our group.

So what is Osteonecrosis you ask?

Osteonecrosis

Osteonecrosis, also known as avascular necrosis (AVN), aseptic necrosis or ischemic bone necrosis, is a disease resulting in the death of bone cells. If the process involves the bones near a joint, it often leads to collapse of the joint surface and subsequent arthritis due to an irregular joint surface. The exact cause is unknown.

Osteonecrosis usually affects people between 30 and 50 years of age; about 12,000 people develop osteonecrosis each year in the United States. 50,000 worldwide.

Osteonecrosis affects both men and women and affects people of all ages. It is most common among people in their thirties and forties. Depending on a person’s risk factors and whether the underlying cause is trauma, it also can affect younger or older people.

 

My very 1st blog post –  Why I became an Advocate and Patient Leader

There is also a link to the booklet in the above post

Here is About Me contains all my links About Me My Links

Link To Avascular Necrosis Osteonecrosis Info AvascularNecrosisEducation.com

I am honored that people actually nominated me for the Wego health awards .

I am up for a few awards from WEGOHealth for my advocacy and there are so many amazing advocates I am blessed to be among them.

WEGOHealth Award Nomination Please Vote

Thank You

Deborah L. Andio

wwwChronicallyGratefulDebla.com

 

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