To Be Determined
To Be Determined
Meloni Thompson(404) email@example.com
My name is Meloni Thompson; I am married to my high school sweetheart and I’m very lucky to have such a supportive man in my life! We have 2 beautiful daughters, with amazing husbands and we love our GRANDS!
My AS story is like a lot of women who get misdiagnosed or dismissed, even when multiple signs point to AS. I am HLA-B27 positive and have a younger brother with AS, who already had both hips replaced. We all know that AS is hereditary. When I left the doctor I was very upset and confused....You know that comment… “It’s very rare in women.” How could I be dismissed so quickly when so many signs were visible?! He missed it and at that time, I didn’t know much about AS. I learned quickly that I was the only advocate for me and I dug in to learn all I could for myself and my family.
I’m not sure when I first started having symptoms, but I do know that my first “arthritis-type” knee surgery was at 15 years old. I’ve always suffered from migraines, joint pain and light sensitivity, but in 2006 I really started having trouble. I was suffering from severe lower back pain, swollen ankles, wrists and fingers. My fingers and toes had the sausage look! My ankles were actually so swollen and painful that walking was very difficult. In 2009, I finally saw another rheumatologist who quickly diagnosed AS. It was a moment of relief, fear and sadness.
Controlling my AS has been a challenge. I sometimes think had I been given the correct diagnosis at the beginning this wouldn’t be the case. I stay on top of research and make sure I’m aware of the new medications that are available and have even suggested them. Pretty much anything that is AS approved, I’ve been on. I like to say that I have good days and bad days. I know some AS’ers call them flares, but for me it’s good days and bad. Calling it a flare would mean that sometimes it’s gone…well, that’s not happened at all. I wake daily with pain, it’s just that some days are worse than others.
As for this disease being hereditary, I’ve already mentioned my younger brother who is HLA-B27 positive and by the age of 24 already had both hips replaced. My youngest daughter started having random joint pain and we found out that she is HLA-B27 positive but currently showing no active AS (thank you, Lord).
As a group leader in the state of Georgia, USA, my hope is that we will be able to come together and share knowledge and our struggles with spondylitis. Through knowledge, education, and support we can live well with spondylitis and hope that one day there will be a cure!
I’m a face of AS and so is my family, but we will not let AS be in charge! I’m continually learning more and more about my body, my AS, and this disease.
Starting a spondylitis support group can be a fulfilling and rewarding challenge. The knowledgeable volunteers who lead SAA-Sponsored Spondylitis Educational Support Groups play a vital role by providing a forum for those with spondylitis to connect and offer support. Interested in taking on this role?
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