Twin Story

By RainbowJen

1 min read

I am 31 years old and was diagnosed with ankylosing spondylitis aged 25 after suffering pain to some extent since early teen years. My visits to rheumatology to start with were frustrating as I wasn't being listened to. Eventually, they agreed to do the MRI which showed clear erosion and inflammation.

I have been on many different medications and finally ended up on Infliximab. It is working fairly well, but I still have pain every day and flare-ups now and again.

Symptoms just like mine

I started to see a mirror image of my life unfolding when speaking to my twin. She had been mentioning pain standing at work, only in the sacroiliac region.

"Oh, it'll just be age! We're only in our early 30s!"

I mentioned over and over about visiting a doctor to see about the possibility of AS in her, after all, her identical twin has it, and there are known genetic links. After suffering for a while, and now talking about stiffness and other sore joints, she went to the GP. They agreed to send her to a rheumatologist.

Early detection

Time passed, as it does with the NHS in Scotland. My twin went for an MRI of her lower back and ultrasound of her hands. They did indeed find evidence of early inflammation. It had been caught early! It means at this stage she is only on anti inflammatories, but I did say to fight for DMARDs or biologics! I'm just glad they listened to her about her twin having an AS diagnosis, and she didn't have the same fight I had!

HLA-B27 Negative

My GP asked recently about my genetic testing, believing it to be positive for HLA-B27, however, I have the results without having had the test! It's negative, and I know this as my sister had the test in one of the first visits with her rheumatologist. There's another quite handy use for an identical twin!

Thanks for reading!
Rainbow Jen

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candrews17 Member
This is fascinating to me! I am an identical twin, and both my sister and I have been diagnosed in the past with two other autoimmune diseases (type I diabetes and Hashimoto’s thyroiditis) within a year of each other. We were so close in diagnosis with the diabetes when we were 5 and 6 that doctors wanted to include us in studies. Flash forward to recently. I’ve had spondyloarthritis symptoms for about 7 years but the symptoms exploded after getting COVID last year. I have recently been diagnosed with psoriatic arthritis, with SI joint and hip involvement, and enthesitis in my hip flexors. My twin, who is about 20 pounds lighter and consistently more active as a physical therapist, has not gotten COVID and doesn’t have this same pain. We suspect that her lifestyle habits and not getting COVID have helped her prevent getting PsA. Nature vs. nurture is really interesting!
Rebecca C Moderator & Contributor
HI <inline-mention username="RainbowJen" user-id="4538727"/> - Your story is very interesting. I am sorry you've been diagnosed as well as your sister. It's absolutely marvelous that you are such a great supporter of her health as well as your own. I hope you both are being adequately treated. I was very curious when you wrote above "... asked recently about my genetic testing, believing it to be positive for HLA-B27, however, I have the results without having had the test!" With SpA - Is it proven that twins who have the same genetic makeup will both have the same HLA-B27 allele result? I did some digging and couldn't find much about it - but did come across this article stating, "While the two babies share the same DNA code, there is more to our genetics than just that. During development in the womb and after birth, our surroundings, exposures, and nutrition influence how our genes are expressed and how our bodies and minds develop ... We know also, that there are some changes to our genes that can happen during the embryonic period or during development. While this rarely happens, it makes it so that one identical twin may have a genetic condition, while the other twin does not. Our genetic code is a very large part of our genetic makeup, but there are other factors, genetic and environmental, that make us unique!" ( <a href='http://gap.med.miami.edu/learn-about-genetics/have-questions-about-genetics/are-identical-twins-100-genetically-identical' target='_blank' rel='noopener noreferrer ugc'>http://gap.med.miami.edu/learn-about-genetics/have-questions-about-genetics/are-identical-twins-100-genetically-identical</a> ) The exact genes and factors associated with SpA and its development haven't been pinpointed - so I guess I would think I'd be tested as well for HLA-B27 if I were a twin, just to be certain. What a stupendous discovery if your sister is negative and you are positive. Sending vibes of warmth and curiosity! Rebecca (comm advc)
James Hollens Moderator & Contributor
Hi <inline-mention username="RainbowJen" user-id="4538727"/> , It's actually pretty fascinating to read this, I had never thought of the possibility of twins having the same medical situations before (shows how much I paid attention in Science class at school). Glad to hear that they were able to detect hers early but sorry to hear that you both have to live with this condition. How are you guys getting on at the moment? Best wishes, James (Community Member)
Anna Samson Moderator & Contributor
I'm glad Infliximab is working for you but sorry to hear you are still having pain and flare-ups. I am having a similar experience with Infliximab and understand how frustrating it is to know a medication is helping but not feeling like it is helping. Thank you for sharing your story, I think it offers important insights into genetic components of AS and inflammatory diseases. Hope you are doing well!
JessicaLipkin Community Admin
<inline-mention username="RainbowJen" user-id="4538727"/> It was so great chatting with you over on Instagram about you/your family's diagnosis journey. Thank you so much for sharing this thoughtful story with our community! I hope others reading this who have family members with AS and who are experiencing pain themself are encouraged to get tested. Wishing you all the best! -Jessica (Team Member)

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