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Patients Ankylosing spondylitis
Does anyone else in your family have ankylosing spondylitis? Is it hereditary?
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manuella26
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manuella26
Last activity on 19/07/2021 at 16:20
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8 comments posted | 7 in the Ankylosing spondylitis Forum
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@Courtney_J I'm the only one in my family who had it. I almost wish that someone else in my family had had it, maybe that would have helped me get diagnosed sooner and I would have had someone to talk to about it. I think I was tested for the gene during the diagnosis process but it was such a whirlwind of tests and scans and things that I don't really remember..
Ankyloo
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Ankyloo
Last activity on 17/03/2022 at 10:26
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30 comments posted | 22 in the Ankylosing spondylitis Forum
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As far as I know I'm the only one as well. I haven't been tested for the gene but I'd be interested to know. Especially for my family members so they can be prepared.
GloriaG
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GloriaG
Last activity on 28/02/2023 at 00:50
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107 comments posted | 47 in the Ankylosing spondylitis Forum
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Hello, my family issues are hard to trace, but my daughter has the gene and Psoriatic Arthritis so does her son. I am sure there is a link to us all with AS. I have had AS for 12 years ( probably way before that ) as I have suffered for over 30 years with pain. I was finally diagnosed 12 years ago after many years trying to find out what the cause was. I am now in a wheelchair. I wish they had diagnosed me sooner. Hugs to you. G
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Hi All
I've had AS for over twenty years, but it's only the last 16 years that I have had a diagnosis, I have the HLA-B27 gene. My Consultant and I have worked together to find the best treatment for ME. It's had its ups and downs but the medication and exercise regime that we have agreed on suits me.
You need to talk to your health care team and ask them about your treatments and how YOU can help.
Have faith in your team, don't hesitate to ask is you are unsure of what's happening to you.
Have fun. STAY SAFE. RICHARD
cooperman
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cooperman
Last activity on 20/08/2024 at 18:31
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23 comments posted | 7 in the Ankylosing spondylitis Forum
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I started with AS many years ago and numerous GP's gave me pain killers. Eventually I started to loose mobility so decided to go private. The X rays showed that my spine had already fused for approximately 12 inches and I have no chest expansion. I then had the blood tests which showed up the gene HLA-B27 to confirm that I had AS. Once we knew what we were dealing with it became easier to target the problem and at 78 years of age I am now mainly in remission and only suffer occasional flare ups. Recently I was contacted by a distant relative who said "what's the name of that condition you used to have" It transpires that my great nephew has started with AS at the age of 23.
GloriaG
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GloriaG
Last activity on 28/02/2023 at 00:50
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107 comments posted | 47 in the Ankylosing spondylitis Forum
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@cooperman Hi, sorry to hear you have suffered so much before being diagnosed. I think many of us have had the run around the same as you have. I was diagnose 12 years ago by an MRI and blood tests. After 20 years of trying to find a reason for my disability. I am now in a wheelchair but my brain is still active. When having a flare, I choose to have Tramadol injections which work much quicker than tablets. The worst time is at night and early mornings. Can't move much then. The thing I hate the most about AS is the lack of independence and loneliness. My life was so busy before this. My daughter also has a similar disease with Psoriatic arthritis and so does her young son. So it seems we are prone to auto immune disease. I wish you well and for comfort in your life. I am 75 but hoping for a couple more years with a little help from my family and friends.
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Courtney_J
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Courtney_J
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Last activity on 13/10/2022 at 16:47
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Hello everyone,
How are you today?
If you haven't seen it already, we recently published an article all about ankylosing spondylitis, going over its definition, who is affected, the treatments, and more! You can read it here: Ankylosing spondylitis: Everything you need to know!
Research has shown that almost 9 out of 10 people with AS carry the HLA-B27 gene, and scientistst think that it may make people more vulnerable to developing AS (though if you have the gene, you may not necessarily develop AS). This gene may be passed on through our genetic material, meaning that AS can run in families as well.
Is this the case for you? Are there other people in your family who have AS or are you the only one? Have you been tested for the HLA-B27 gene?
@WhiteWolf @BakuBunny @Jason1 @thedavid @liamjcross @CynthiaC @sASha! @1976apache @Coling @Missy2 @danjoshaw60 @eileengreen @Joduell @Moke772162 @saxon49 @SuziBloor @DebiJP @Jenpat @Catblonde @Suzief @tracy1 @Shelldurrant
Feel free to share here!
Take care,
Courtney