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How to comment, reply, react, bookmark, and more Feb 3 8:30pm | By Colleen Young, Connect Director (@colleenyoung)
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@ellenanne33

Anyone dealing w autoimmune disease PERM ? Progressive encyphelomyetis w rigidity monoclonous ? My husband retired from FDNY was there on 9/11 .making sure we are doing everything possible as far as treatments .he is on alot of pills on top of receiving ivig every 3 weeks and rituxamab every 6 months .feel helpless knowing he feels like crap everyday

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Replies to "Anyone dealing w autoimmune disease PERM ? Progressive encyphelomyetis w rigidity monoclonous ? My husband retired..."
Lori, Volunteer Mentor | @loribmt | Feb 22, 2023

Hi @ellenanne33. I see you’re trying to connect with other members who have PERM. While I didn’t find the exact diagnosis, PERM is a subtype of Stiff-person syndrome. We do have a number of members who have been having conversations regarding their conditions.

@sheeva888, @bsnodgrass, @mdllama and other members have conversations in this link: When you click on this link you’ll see the discussion was started back in 2011. Underneath the opening paragraph, you’ll see a box that says Oldest to Newest. Click on that and you’ll be able to reverse the order to see the most current replies.

https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

There’s not a great deal of information on PERM. It has to be incredibly frustrating and disappointing. I’m so sorry your husband is having to face these health problems. So many of our brave firefighters and other heroes who rushed to help the victims in the 9/11 tragedy are dealing with health issues possibly stemming from all the pollutants they were exposed to during that time.

Try the link I gave you for the Stiff person syndrome. Members there may have some valuable insights for you.

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