It’s Up to You and Me We Have a Responsibility to Raise Awareness for AVN and all Rare Diseases
I have been thinking a lot about this lately it’s a great honor and huge responsibility.
As someone living with a rare disease/ disorder like Avascular Necrosis/Osteonecrosis.
There are days I feel pretty good and sometimes days when I feel like I have been run over by a truck then they backed up over me to see if I was alright
I feel such a responsibility to create awareness for AVN/ON and other rare bone diseases not just only on Rare Disease Day, but all year round.
I work my fingers to the bone on social media raising awareness and writing trying to keep new information flowing & ideas fresh while at the same time dealing with my own pain from avn.
Any Time Is A Good Time to Act on Raising Awareness
In a world where social media has such power to bring about change and create awareness, it seems an easy enough task to ask people to help us raise the profile of rare diseases. But it’s really not easy.
Perhaps some of this responsibility I feel has come from my past experiences of sharing other important causes, such as domestic violence awareness, helping the local shelter , organ donation, etc…which are rarely if ever reshared by people on my social media platforms. If you are one that shares Tbank You!!
They seem to forget about the Rare Diseases the Orphan Diseases.
Shows like TheDoctors, DrOz,HealthNetworks,The Local News, The World News, Newspapers etc….
They focus on other things 24/7 but can’t give AVN or Rare Disease Day 1 -5 minute story
It’s shameful they can’t bring attention to Rare Disease Day.
Or all these athletes and rockers that have had avn or has avn why can’t they come forward speak up
We need a rare disease month
So it’s our responsibility us the patients and our right to bring awareness !
Early diagnosis and early intervention is essential to saving the bone or joint.
Research is crucial.
Not only can it lead to better treatments but it also helps raise awareness.
This, can reduce the wait for a diagnosis and reduce the number of misdiagnoses people receive on their avn diagnostic journey.
The disease is rare but the human needs and dreams are common. Every patient has the right to live in less pain and live their best life. We deserve to have research and faster FDA approvals
Remember just because your illness maybe invisable, Invisible does not mean nonexistent, a good day does not mean cured.Or that tomorrow will be just as good.
We do the best we can to get through each day. Somedays each hour.
We need more specialists and doctors to take a honest interest in Avascular Necrosis and all rare diseases.
We need people not just to hear us but listen, understand.
From doctors to families
You don’t have to understand avn completely to be supportive