A.S. Face 0202: Amanda


202Hello, when i stumbled upon your blog it brought a lot of joy to me to know i am not the only one and that a lot of people have had the same struggles as myself, thank you so much for creating this blog to bring together people with A.S. I would love to be part of your goal.

My Name is Amanda, and i am from Listowel ON, Canada

I used to be a healthy active teenager that played rugby and field hockey. When I was 15 during some of my practices I would get unbelievable amounts of pain shot through my hips. I thought I was just from playing sports. After suffering for 6 months I went to my family doctor to let her know what was going on. They had told me it was just growing pains and I started wearing a brace and going to physio. After waiting 3 months to get into physio and going to physio nothing had changed so I went back to my doctor. She had noticed that I had bowed legs and sent me to an orthopedic surgeon. After waiting 8 months to see him and having a lot of hope in him, he told me i was crazy and to go get counseling. He said that I was just a teenager starving for attention and that the shape of my legs and the fact that i walked pigeon toed was not causing any pain. Discouraged I went back to my family doctor, and she was determined to find out what was wrong with me and sent me to a rheumatologist. She did a bunch of tests but still didn’t tell me anything and referred me to another rheumatologist, but i couldn’t see that doctor until I was no longer a pediatric. During this time I had to stop playing sports, was in huge amounts of pain, and thought no one understood what I was going through. The day after my 18th birthday I was finally given some hope and was diagnosed with A.S. By this point i had tried every anti-inflamitory on the market and had little hope. So i was prescribed Salfasalizine. I started taking this medication and within a month i became very sick and had a few episodes of paracarditis. I went off that medication right away but the heart problems have not stopped and had no way of controlling the pain. I am suppossed to start taking Humira, but we have had nothing but problems trying to get funding for it. I was working in a factory to try to save money for school, but i just couldn’t do it any more and recently had to quit and apply for dissablility. As a determined independent teenager I have not been taking very well to relying on people so much. I am still struggling with having a disease mentally and how much it is affecting me, and just not knowing what the future entails. A lot of people still don’t understand why things are so hard for me since i try so hard not to let it show, but the pain is starting to take over. Being only 18 and having so many hope and dreams it can be hard not to let the disease get in the way.

I do truly appreciate what you have done for everyone with this disease, it has brought me hope 🙂

Ontario Canada

8 Responses to “A.S. Face 0202: Amanda”

  1. Hang in there Amanda
    Check out my story # 372
    The No-Starch diet plus supplements will give you hope and relief.
    Good Luck
    Another (AS) friend
    Eric baker
    Stockton calif

  2. Dear Amanda,
    Thank you so much for sharing your story with us. I too struggled with behing a teenager with AS, it took 32 years to get my diagnosis. I am thankful yours came early, means there is a lot of hope to change your future. Rememeber you are never alone. Please check out the other stories we have some amazing young people here.
    Sincerely Cookie

  3. Hey Amanda,

    Your story is almost identical to mine. I was diagnosed with AS when I was 15, I’m almost 19 now. It’s hard to keep your hopes up I know, but keep going, you can get through it. If you can get on the biologics, they could really change your life. Many people go into remission on them. I started humira about 2 months ago and am still hopeful for good results. You will find something that you really enjoy and you can live a good life, I’m sure of it.

    Keep fighting,

    • I have heard really good things abouy Humira as well, i hope everything looks up for you. I had never heard of the disease or know anyone with it so hearing about other people my age with the disease, and older people that have made it through the disease breing me hope. 🙂

  4. Oh Amanda, I get so mad at AS when I see what it can do to you young people. BUT-there’s a lot of FACE’s like Sebastian, who are your peers, who you can turn too for comfort. And there’s a lot of FACE’s like Cookie(who was a peer to Moses!!!-just can’t get her riled though) who are wonderfull inspirational esamples of people who “made it” with AS!! Ya know, I gots a feelin, that in a year or two, you’re going to be reassuring FACE #10413 that she too can make it through.

  5. My pain started when I was 15 also. Doctor thought it was juvenile rheumatoid arthritis. It wasn’t until my mid 20’s that I was properly diagnosed with AS. Somehow, I managed and coped with the pain and 31 years later, I still have it, mostly in my neck, back and hips. Fortunately, I’ve been able to lead a pretty normal life. Just put on a positive attitude, and view the glass half full, not half empty. Remember to stretch, exercise and dry yourself off really well after you shower (esp between your toes and back of your neck).
    Good luck! And may you live a long and fulfilling life!
    Ernest (Face#403)

  6. just streghten ur mind. don’t lose hope… I also have AS and i overcomed the pain, it’s just being positive and keep believing.

  7. I was just diagnosed back in November, at the age of 29. However, I started experiencing symptoms as a teenager as well. It is not easy being sick and being so young, because you feel so conflicted. Your heart/brain wants to be a normal teenager, go out and party, go to college, spend time with friends, etc. But your body just will not allow you to. I hope that you are able to start the Humira soon. I have been on it since January with no relief. Just started methotrexate in addition to the Humira, so hopefully that will slow down this monster of a disease.

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