Move arachnoiditis from "rare" to a known disease!

  • by: Mallory Ryan
  • recipient: NORD, CDC, and the Medical Education Community

Arachnoiditis has been listed as rare because they claim there are less than 200,000 people diagnosed with it. Many people that have it are misdiagnosed with conditions such as fibromyalgia or multiple sclerosis. Please raise your voice and show them that we are not "rare" and that arachnoiditis should receive the acknowledgment, understanding, and acceptance that it deserves and that doctors should have better knowledge of it.

To whom it may concern, 


We are requesting help to get arachnoiditis acknowledged as no longer being a "rare" disorder. The prevalence of arachnoiditis has grown substantially and there are many more patients that have it but are misdiagnosed with conditions such as fibromyalgia or multiple sclerosis. There are far too many doctors that are ignorant to the condition due to its "rarity" and this has to change. Most of us are not treated fairly or with equality when we go to emergency rooms because the doctors see us as drug seekers instead of an arachnoiditis patient in severe pain. The unrelenting excruciating pain that we suffer from on a daily basis most certainly does not feel rare. We are here to have our voices heard and make sure that arachnoiditis is a recognized condition and that the world will know it when they hear it. The pain we have has been proven to be just as bad, if not worse, than that of cancer patients. We deserve to be acknowledged! Also with Arachnoiditis being listed as rare it makes it extremely difficult to get approved for disability. The pain prevents us from working which puts us in a financial hardship. This causes more stress which in turn causes more pain. 


We are also requesting that Arachnoiditis be taught in medical schools so that future nurses and doctors will have the knowledge and understanding that our condition requires. As patients it should not be our responsibilities to educate them but rather theirs to educate us. We put our health and lives in their hands but they cannot properly care for us without this knowledge. This is like expecting a person with no medical training to perform surgery! Even with us educating them about our condition, most of it doesn't matter because they don't believe us! This could be very dangerous! If any one of us were to go in unconscious and our records weren't right because of the doctors that don't believe us a lot of damage could be done! I have had personal experience of showing my records confirming my Arachnoiditis yet the hospital still refuses to put it in my chart. This could potentially be just as dangerous as not putting someone's allergies in the chart. 



We need to make an impact and change the way our condition is looked at and we could use all the help we can get. Thank you for everything you have done and hopefully anymore that you can do! 

Update #18 years ago
I want to thank everyone so far that has supported me in this journey and signed this petition! Arachnoiditis deserves acknowledgment and acceptance. Please continue to share this so we can get the signatures we need!
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