A.S. Face 0849: Nicky

Face 849Nicky 849Hi My Name is Nicky,I’m 46,  I and both my sons have AS, I also have Scheuermans Disease of my spine. Recently I have been diagnosed with Avascular Necrosis of my Jaw joints. I have other health conditions affecting my lungs, thyroid, hearing and suffer with Tinnitus and have been medically retired from my profession as a Staff Nurse. My youngest son was diagnosed aged 12 with AS and my eldest son was diagnosed in 2005 and also has the Hyperflexamobility. We work together as a family and each day is a struggle. Despite this we laugh most days and live our lives with half full glasses, trying to turn most negatives into positives. AS has had a huge impact on our world but we wont let it hold us down.

England, United Kingdom


12 Responses to “A.S. Face 0849: Nicky”

  1. Hi Nicky, you sound like you have fun in life despite everything 🙂

    Jane 709

    • Hi Jane, we try, some days I just cant get out of bed, but on the days I do I try to fill it with as much as I can, there is no point crying, through my years as a nurse I watched in awe the elderly folk endure so much with such positivity and I always said to my self if I ever get sick Im gonna be the same..and its much better to try to be positive to AS than be a slave to it xx

  2. Dear Nicky,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  3. Thank you for sharing with us Nicky. We are so very glad you are here and with us.

  4. Yikes! I have AS, my brother and dad have ulcuritive colitis, and my Nephew is terrified of getting either! But it makes me feel better knowing that at the first sign of either, he’ll get in to the doctor quick, and his family history will surely get the doctors attention, and hence, early detection.
    I’m also glad that your sons were diagnosed before they started their careers…I’m thinking something in the medical research field!

    Love your attitude…love turning the negative into a positive..and might I add…your smile blinds me!

    • Hi Derek, I dont know if you know but your nephew can be tested to see if he carries the gene for AS, we have the HLA B27 gene, which comes in many forms, both my sons and I have the genetic gene but has manifested in different ways. My youngest had multiple bone lesions sparing only 2 bones in the whole of his skeletal system, the out look was poor and a life in a wheelchair, but he had multiple joint injections including whole spine, he too wasn’t going to succumb to life with wheels, he now is a fully qualified mechanic, he does struggle some days with the pain but nether the less he is not in a wheelchair. I know there may come a time when things will change but till then …get up and do what you can, for as long as you can and as much as pain allows, and smile through it all. Thank you for your comment about my smile, that was nice!

  5. Thanks Nicky, 37 years now with AS, so yes life will and can be good. Try not eating any gluten or wheat, your sons too ! The undigested starch, ferments in your small intestine and either causes leaky gut (colitis) or Crohn’s, and is the bony material in Fusion (AS).

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