A.S. Face 0988: Zowie Morgan-Morris

Face 988

My name is Zowie, I’m 27 years old and live in the Uk. I was diagnosed with AS around 4 years ago after having a miscarriage. For as long as I can remember I had pain in my spine and shoulder blades but my Dad always put it down to me wanting time off from school and would never take my complaints seriously. The intense pain in my hips started when I was 22 and I was left unable to have any movement in the base of my spine. The tiredness was overwhelming and I gained weight due to eating carbs constantly. Doctors told me I had sciatica which is definitely correct but not the underlying issue. I fought to see a specialist as here in the uk it’s a referral system through your GP. Eventually after a ton of tests the AS was discovered. It was only then that my grandfather came forward to say he had been diagnosed with the disease 40 years previous. My aunt also has iritis which is linked. My specialist gave me indometicin and told me my life would return to normal. I expected to be able to wear heels again, run for a bus, sit on the toilet and climb stairs without yelping, I’d even settle for just being able to turn over in bed at night lol. Well what I got was a wonderful year travelling Europe without pain and after returning to England I became pregnant with twins! That, I was not expecting! Now I eat healthy, exercise and don’t drink or smoke, the pain is more manageable. I have difficult days but with the help of my amazing husband and supportive family I am the best mom I can be to my 1 year old babies x

Regards

Zowie Morgan-Morris

England, United Kingdom

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7 Responses to “A.S. Face 0988: Zowie Morgan-Morris”

  1. Dear Zowie,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Awesome story and inspiring. 🙂

  3. Hi Zowie,

    good to hear your story, I am in the UK too.
    I have always bee curious how it would be to go through a pregnancy as an AS affected person.
    I am kind of so frightened of complications that I am planning not to have any children.
    My other worry is passing the Gene on to my child.
    When my father was diagnose I was about 11years old. I have 2 sisters, our mum took us for a blood test under the disguise to find out how our blood sugar is. I was the only one who had the gene.
    I guess knowing this worried my parents, they told me later in my teens when I became more symptomatic and pains could no longer be put down to growing pains.
    Are you back on any medications since the birth of your beautiful children?
    I know what you mean when you say, it be nice to be able to turn over at night. I had many nights where I had to lift myself up by my pj’s to turn over, and it still hurt in an unbelievable way.
    There is nothing worse then to get stuck in a position and not being able to get out of it without causing yourself amazing amounts of pain.
    This disease really is a little bit crazy…

    It be good to hear from you and find out how to cope having children and AS.

    All the very best

    Marie

    • Hi Marie,

      I always wanted a baby but was so scared when I found out it was twins. My first reaction was ‘how will my broken body cope?’ But the crazy thing was all through the pregnancy and up until last month I was completely symptom free. I haven’t returned to pain meds as I still breastfeed them both and I am now experimenting with a low-starch/ sugar free diet to see if I can pin point any trigger factors. I’ve lost three stone since having the twins and that has made a big difference. The thing I struggle with mainly is keeping positive through the flare-ups as I can’t do what I need to do and seek comfort in wrong foods which I believe make it worse. Having the babies has transformed my life and given me a new focus. I battle not to fall into bad habits of my old life when my AS is at its worse. I am determined to find a diet that could minimise the flare-ups…. I owe it to my family to be the best I can be all the time. I try not to think about passing it on to them but it is a worry. I know there isn’t anything I can do about it now and will do all I can to help them if they do have it. I will be the best person to give them support. My grandfather is a great comfort to me as he suffered the disease worse than I have and never had a day from work. He got over the flare-ups and led a normal life again x

  4. Thanks for getting back to me Zowie.

    I understand what you are saying.
    I am glad you are open to the diet adjustments as they definitely help even if they do not cure the whole problem.
    I decided last year that I am going to have a great time every day, that I will be positive and happy even on days when life is not easy – the mind is very powerful – it made a lot of difference to my quality of life.
    Once you are finished with with breast feeding you your try Low dose Naltrexone – it has no side effects and I think would fit right in with your approach. It’s also worth while working with someone who can check your gut health and address any things that may be out of balance.
    I research and learn every day and apply everything natural that makes sense and does no harm to see if I can get even more improvement in health and vitality.

    All the best to you and your family.

    Marie

  5. Hi Marie, you are wise to be cautious about having children, but if you have always wanted to be a mother, please do not let AS hold you back.

    I was just diagnosed last year at age 52. My children are 13 & 16. My pregnancies were tough, but so are a lot of others, and I didn’t think twice about it.

    Unfortunately my older son has AS – it was actually his diagnosis that led to mine. Getting hit with the news that my son had AS, that it was inherited from me, and that I had it too was devastating. I was heartsick for months.

    Tomorrow I take my younger son to the rheumy to see if he has it too.

    Into every life a little rain must fall. Do not let fear stand in your way of motherhood. You have a wonderful approach!

    I wish we didn’t have AS; and I am sorry about that but can’t change it. I have loved every minute of my children (OK, maybe not EVERY minute lol). They have enriched my life in countless ways.

    If it is your dream, find a way to make it work and GO FOR IT GIRL!!!

    Jessica

  6. Hi Zowie,
    Your babies are beautiful and the pic reminds me of some that we have of our boy-girl twins at that age. They are now 17 and typical teenagers who of course we love like they were still cute, little babies 😉

    I am glad to hear you are managing well with the AS and hope that it continues for you. I heard a doctor talk at a support group last night and he said the offspring of those of us with the B27 marker have only a 50% chance of getting it and of those who get the marker, only 10% will develop AS. However another fellow at the meeting who has AS said he doesn’t even have the B27 gene!

    All so confusing but I will hope for the smaller odds of passing it on for all of us!

    Best of luck and those babies are adorable!

    Tom #739

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