My Skin Is Cured of Scleroderma, but the Rest of Me?

Nicola Whitehillby Nicola Whitehill

In Columns, Living The Dream.

My Skin Is Cured of Scleroderma, but the Rest of Me?
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Living the Dream Scleroderma Style

Almost 18 years to the day from my visit to the Scleroderma Unit at The Royal Free Hospital in London, I was exhilarated to have been told on Nov. 30 by world-renowned scleroderma expert Prof. Chris Denton that my “skin is now cured from scleroderma.”

curedI was given 15 months to live by my medical diagnosing doctor in autumn 1997 when I was 24. In December 1998 I arrived at the office of Prof. Denton and Dame Prof. Carol Black at the Royal Free Hospital in a very bad way. My body had turned to stone.

The skin covering my entire body had become tight, itchy and painful — it felt too small for my body, sort of like shrinking a piece of clothing in the wash. This was accompanied by swollen joints and weak muscles, making any physical exertion, including standing, a huge feat. My fingers and toes were always blue, with a minimum of 4 digital ulcers at any one time. All this, along with a level of exhaustion I had never experienced before (even the week I spent in Ibiza after my A-level exams couldn’t compare with how tired I felt).

Following many extensive medical tests, the good news was there was minimal internal organ involvement. However, the progression and aggressiveness of the fibrosis and lack of elasticity of my skin and connective tissue placed me on the “diffuse systemic sclerosis critical patient” list. An urgent medical treatment plan was drawn up with numerous IV cyclophosphamide infusions scheduled. If they were ineffective, I would have a stem cell transplant.

The only way I can explain how I felt leaving the hospital is an overwhelming sinking feeling inside. I recall having to consciously force myself to breathe. But I also felt comforted knowing that I was now under the medical expertise of global leaders in their field. Their dedication and commitment to improving the scleroderma patient landscape invoked huge hope in me that a cure would be discovered within my lifetime.

And most of all, they would “pull out all of the stops” to do everything they could to help me — and, of extreme importance to me, help me realize my childhood dream of becoming a barrister (British attorney).

My new medical team took no time in getting me hooked up to the chemo drips. I had two sessions before the Christmas holiday, which was repeated at the start of 1999. At the same time I was taking mycophenolate mofetil (mmf, 2g/day). By Easter 1999, my skin symptoms gradually eased, and I was taken off the stem cell transplant list.

On March 1, 2004, I qualified as a self-employed practicing barrister, and so, having achieved my personal life goal, I reduced the mmf dose with a view to stopping it completely. By the end of June, I was back on my settee after experiencing a relapse with my symptoms, mainly lethargy, intense musculoskeletal pain and neuralgic pain. Six months later I relocated to my birth town of Southport, and my full-time job was now keeping my symptoms at a tolerable level.

Digital ulcers were my nemesis until I began taking Bosentan 125 mg twice a day until October 2012. Due to my Raynaud’s sensitivity, I have found that the prevention of attacks is far less painful than having an episode. This makes me a “home bird” all year long. Again, words are difficult when trying to describe an attack of Raynaud’s phenomenon. I could compare it to slamming your hand in the car door, but the pain is impossible to articulate.

For more information about Raynaud’s and scleroderma, read my column from September: Raynauds seasonal changes.

If I am honest, 18 years ago I would never have believed (given the medical advice I had been given, combined with how I was feeling and what was happening to my body at that time), that I would still be alive, let alone be told that my skin would be cured of scleroderma. I don’t want to be morbid, just honest about my reality at that time.

Again, I struggle to describe the level of gratitude and appreciation I have for Prof. Denton and the scleroderma unit team at the Royal Free Hospital. I am also extremely grateful to my local medical team here in Southport, Dr. Sykes and the rheumatology team, as well as Dr. Bontea and the dermatology team at Ormskirk hospital, and of course my dentist, Andrew Booth, and hygienist Louise.

As a long-term scleroderma patient, my main health challenges now include extensive calcinosis, telangiectasia, dry mouth and gum recession, chronic MSK pain and Raynaud’s. I have stabalized my gastrointestinal symptoms by altering my diet and including daily smoothies and fresh juices for maximum super-food nutrition.

These unmet clinical needs certainly show that scleroderma is more than skin deep, causing devastation to the vascular and soft tissue and connective tissue processes along the way.

I have written about the the scleroderma olympian and what I can expect from a scleroderma diagnosis, as well as the long term scleroderma patients’ annual check-up.

All in all, I am more than aware, and I am extremely humbled to know, that I am a very lucky scleroderma patient regarding the “mild” set of symptoms I now experience compared to some of my fellow patients, who are far braver than I in dealing with their disease activity.

But one day, hopefully very soon, I want to be able to say, “I used to have scleorderma.”

So until then, I will continue to be delighted in how I feel, knowing that “my skin is cured from scleroderma.”

This is the T-shirt I was wearing on the day I was reminded that I was a medical miracle:

Scleroder

Living the dream, scleroderma style, hoping for a cure …

#SclerodermaFreeWorld #RaynaudsFreeWorld

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

Nicola Whitehill
http://www.cosmicfairy444.blogspot.co.uk
Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Nicola Whitehill
Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
http://www.cosmicfairy444.blogspot.co.uk
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19 comments

  1. Kay Womack says:

    My daughter has Scleroderma into 2 years now, breaks my heart to see her suffering so much. If anyone has help let us know..

    Reply
  2. Suffered says:

    I helped my self a lot by using whatever natural treatment I could find. My first target was digestive system: broken cell Chlorella, lots of fruits, removed eggs and milk from my diet, reduced red meat intake, used sage tea, lots of kefir drink for good bacteria, reduced coffee and eliminated processed sugar out of my diet. This resulted in regular sleep, highly reduced bloating, weight gain and energy increase. I also experimented with natural herbs and had great results for my blood flow: curcumin, grape seed extract, neem, sage, gotu kola, and Chinese herbs for blood flow such as white peony root. Adding zinc and vitamin d3 along with vitamins proved to be a very beneficial.

    Reply
    • Emilia Pitrelli says:

      I’m glad to see you took grape seed extract and it helped blood flow. . . I have scleroderma and I want to try that . . . the pressure in my pulmonary artery is going up and I have to see a specialist . . . I know the grape seed extract has a form of nitric oxide in it to help blood flow, but wasn’t sure it was ok for a scleroderma patient.
      Also I’d like to mention a helpful tip for others who have calcinosis due to Raynauds . . . you can make a bandage from a banana peel . . . soft part (pulp side down on top of the calcium “plug” area (put a bandage around to hold). . . leave it on overnight and depending on how hard the calcium plug is the “banana pulp” will release it . . . took about 2 weeks for a very hard plug to come out of my finger and if it’s still liquid the calcium
      , it will come out in a few days. . . . I’ve cured my fingers of the calcinosis plugs every time . . . Thanks for writing about the grape seed extract. . . Emilia

      Reply
  3. Ramesh says:

    My 7 year old son has been suffering from past 2 years,it is very difficult as we parents going through and for him I don’t no what he is going through because as a child he cannot express and we are also trying to understand him but one thing definitely I will cure him so please help me by references and hope that God will never punish his pupil like this type of deadly rarest desease any more

    Reply
  4. Jay says:

    My mom was diagnosed with systemic scleroderma in 1997 and she past away in the beginning of 2013. She was only 54. I miss my mom a lot.

    Reply
  5. Subrat Mishra says:

    My wife was diagnosed scleroderma , two years ago, recently she again having problems with getting up from floor or chairs,without grabbing some hold from her hands to pull herself, please let me know what treatment to be given her

    Reply

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