Do you know anyone else (in person) who has the same condition as you?
I don't know anyone else, apart from my online friends, who have this condition.
I'm curious to see if you do.
I, also, do not know who else has it in real life except for my daughter who has AS and my grandson who has uveitis. I do not talk with them about many of the difficulties I have because I do not wnt to scare them. I also have MS. I have made a group with six other women who have MS and we exercise together online. I know that Spondylitis Association of America has podcasts and groups. I haven't joined any group yet, but I may as my life settles down. I appreciate this community.
My daughter diagnosed herself at 42, after her son began having Uveitis at about 10 years of age. He's been on Remicade for years. She has had back pain for a number of years and asked her doctor if she could be tested for the HLA-B27 because her son had had Uveitis for years. She was then diagnosed with AS. Then she told me I should be tested - I was positive also.
If I were in your position, I would have her tested for the gene - if you tested positive for the gene. Treatment is would always be an option if she finds pain is getting worse.
thank you so much for sharing with me. I will pay close attention to how she feels. The good thing is I am aware of the symptoms and open to taking it further if needed. Growing up I didn't have that around. I am thankful going through this disease and diagnosis process has helped me have an open mind.
Hope you are doing well and having a good day,
Nicky (Team Member)
I don't know anyone else who has it. But as you mentioned, I have met some people online who have it.
Thanks everyone for all of your comments. It's hard not knowing others in real life that have the same experiences as us. It makes me even more grateful to connect with you all through this wonderful community. Ali (Community Member)
No, I don’t know anyone (in person) with AS, only an online community. It would be great to have a nearby resource. Do you know if this community ever has a support group meeting like a Zoom?
This is a great idea Rachel! If you like, you could make a forum about this here https://axialspondyloarthritis.net/forums and see if people are interested! Ali (Community Member)
