A.S. Face 0060: Alison Lorenzo Cox

My name is Alison Lorenzo Cox, I’m 32 and an ASS. ( Ankylosing Spondylitis Sufferer)  I’m originally from the UK but am residing in Cape Town, I am a self employed Personal Wellness Coach and leading presently an healthy active lifestyle.

However let me start at the beginning, I don’t think there was ever a time I was not stiff. From a young age I can always remember being a little less flexible than everyone else and put it down to my muscles being just tighter! And bad genes. I was a student dance teacher at my local dance school from the age of 16 which always made me smile especially when it came to demonstrating and my legs were not going to go the height or angles as others, or the back bends that would not come or the constant hobbling after a day’s dancing because in my mind I’ve overdone it, pushed too hard or again was just not built like that.

At 18 was when things started to get more serious constant hip pain, the infamous penguin walk, so much my Spanish father in law recently nicknamed me ‘Penguino’ at the time I thought it was cute but him being in the profession of contortion and knowing a lot more about back problems than me had identified before we even knew.

I had levels of chronic back pain that if I wasn’t in tears I was gritting and grinding my teeth so hard I would make the gums bleed and chew huge holes in the sides of my mouth. I would turn my whole body just to see left or right, bending was none existent in any direction. I would have endless sleepless nights and worse days. I truly felt like an alien in my own body, I was so frustrated that I was young and had the mobility of an highly immobile Old Age Pensioner.  I was living off NSAID’s to the point I am now immune to them, I was also prescribed Codeine by my doctor for the pain, however was very careful with these as they are highly addictive and refuse to be a pill popper.

It got so bad sometimes I was the butt of my peers and family’s jokes which in public I would laugh along but the anger would boil inside that at some points in time you would explode with such emotion your family thought you were insane. I was stubborn and refused to see anyone but at the age of 20 finally gave up.

I had a variety of misdiagnosis from chiropractors, Physiotherapists, doctors, osteotherapists, specialists With comical diagnosis’s of floating cartilage, lazy spine, uneven hips, curvature of the spine, lazy muscles.

I had a crazy mix of treatments including, shock therapy, traction, hydrotherapy, heat therapy the list goes on and the bills were worse.

Until I met a Chiropractor who till the day I die will be eternally grateful for he refused to treat me as I was in his words ‘untreatable’ after 3 failed sessions, he demanded I x-rayed my neck and hips.

From these I was immediately referred to my rheumatologist  and finally correctly diagnosed  in February 2011, yes I was scared but the relief to have a correct diagnosis, that I was not a hypochondriac, this was real and not just bad genes. I didn’t have poor muscle structure just fused sacrum joints and several areas of fusion from the neck down.  I was informed I would need hip replacements and to take TNF blockers.  Fortunately I was lucky enough to qualify for a clinical trial but this was cancelled 7 months later.  I realized from the day Iwas diagnosed that I would do everything possible to prevent progression of my condition. I changed my nutrition (as advised by my rhumy) to a more suitable diet, starting following strictly the guidelines I give my clients, increased my nutritional supplementation including a high dosage of omega’s and glucosamine. I took up Pilates and Yoga aimed for people with arthritis (yes I am the youngest in my class!)

And to date I am proud to say NO hip replacements, currently no meds but this could change I don’t know. My mobility is the best it has ever been, I have movement in my neck which I hardly had, I still have the audible crunch in my ears each time I turn however minus the pain. I can bend in ways I never could I am still limited but can actually bend! And yes there are days I get the aches but it is in a hugely different place to where I was. I firmly believe a positive frame of mind helps and being thankful everyday for the things we have and not getting hung up on the things we don’t. I feel like a whole new Person with awareness not to push to hard and to be a example to others there is HOPE and there are solutions whether you go down the medical or natural route.

Guildford, UK Cape Town, South Africa

11 Responses to “A.S. Face 0060: Alison Lorenzo Cox”

  1. Thanks Alison for taking the time to share your story! It is wonderful that you do pilates and yoga – I really really do not like movement – but hope to find a class that says “disabled, aimed for arthritis – or something. Water excercise would be nice too. But then it is hard for me to do regular streches at home, perhaps I should start there. LOL Have a good day, and thank you for your story!

  2. Dear Alison,

    Thank you for taking the time to share your story with us. Such an amazing inspiration you are to us.
    Sincerely Cookie

  3. I would love to hear more about your diet. I have tried to research this and haven’t had much luck.

    face 23

    Tori Codona said this on November 8, 2011 at 2:08 am

  4. Dear Alison

    Thank you for your amazing encouragement today. I now realise that I may not have had the opportunity to hear your inspirational story if I hadn’t come out of my shell and challenged the young guns “to beat my score” of paddling along the Milnerton Lagoon. I will definately take you up on the advice of Pilates and supplements. Am I in pain tonight? Damn right, but I conquered another fear and I am willing to improve…my Lifestyle… so that’s a start.

    Glenda Jane Pontes said this on January 15, 2012 at 7:46 pm

  5. hi everyone sorry for the delay been a manic few months!
    Tori:- i will email you what i am doing hopefully it can help you
    Cookie:- thank you for inspiring people to share their story!!
    Glenda :_ found you on FB but cannot write on ur wall pls pls pls send me yuor email would love to go for coffee sometime!!

  6. Thank you for the uplifting message about how you are fighting this battle. We all need hope that there are things that can help with some discipline. Hopefulness, joy in our spirit. I am not at that place yet. Maybe grieving over my fears that my life may change and maybe I am thinking about this all wrong or absorbing it incorrectly. I want joy and laughter and good eating habits, exercise to catapult me and all of us into being overcomers. Is it possible? And my heart is that I want it for each and every one of us. Can it be?

  7. Thank you so much for your story! I am 29 years old, pregnant with my fourth boy and just tested positive for hla-b27 (as has most of my family). I’ve grown up being sick all the time and have always been into health and nutrition knowing that it is key to a full life for most people. Reading others stories I’ve been sitting here panicking about what’s to come but reading yours re-enforced what I had already been thinking and researching! I am going to try like hell to keep a handle on this by diet, excercise and supplements! Thank you so much again! Very inspirational!! :).


  8. Hello Alison I also live in Cape Town and am an AS sufferer, coping mainly through exercise, I would also like to hear about where you practice and the diet your rheumy recommends.

  9. Hi Alison and Margie, I’m another AS sufferer in Cape Town. Glad to hear you are managing your AS through exercise. Are you finding Yoga and Pilates enjoyable? I gave it a few months and hated every minute of it. Are you going to a proper studio or through Virgin Active, maybe I have just tired the wrong places. I am on medication for AS which is helping a lot, it means I’ve been able to start netball and running again 😀 It’s horrible having AS, but it’s nice to know that there are fellow South African’s who know and understand what AS is. Stay strong! 🙂

  10. Hi Alison,
    Thanks for sharing your story, like yourself I’m also a AS sufferer 38 yrs old and reside in Cape Town. I’m doing much better through changing my diet and exercise and I’m currently very active.
    Its great to hear that I’m not the only one but feel that its a disease one can manage if you just put your mind in the right space.

    Keep the hope alive. 🙂

    Kind Regards,
    Peter Reed

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