DAY 9 Scleroderma Awareness Month – DIGITAL ULCERS

DAY 9 Scleroderma Awareness Month – DIGITAL ULCERS

Day 9 Scleroderma Awareness month

Day 9  Scleroderma Awareness Month – Digital Ulcer Management

Today’s image shows the current NHS England management guidelines for The Best Practice of Digital Ulcer Management.

I was honoured to be the ‘scleroderma patient expert’ member of the NHS England medical team who put these guidelines together and were published in July 2015.

I am extremely passionate about raising awareness concerning digital ulcers.

Before I started taking Bosentan 125mg twice a day continually, in October 2012, my hands would always have at least 2 ulcers, as well as my toes.

The pain from ulcers combined with sclerodactyl fingers and scleroderma skin is excruciating, which can be triggered by the smallest of touches.

Not only are ulcers extremely painful, they are extremely disabling and debilitating, making most tasks requiring the use of gloves. Tasks involving water add a whole new dimension, as it is better to keep ulcers as dry as possible to assist in their healing, making personal hygiene tasks a challenge, even when wearing waterproof gloves! A dry ulcer will require moisturising with emollient to help with its healing.

Should a digital ulcer become infected, antibiotic intervention will be necessary, which in some cases may be too late, leaving amputation as the only option. Early medical intervention is essential, in an attempt to prevent this from being a reality. And, of course, continual antibiotic use brings along its own set of problems, usually GI related.

Once the ulcer heals, if it ever does, and this could take years, the body’s tissue and skin where the ulcer had been, is left extremely sensitive and pitting / scarring can be seen.

There is currently no cure for digital ulcers, with treatments targeted at symptom suppression only. ‘Prevention is better than cure’ as I outlined in Days 8 and 7.

I have tealed my nails for Scleroderma Awareness Month. My hands are the best that they have been in terms of digital ulcers, and calcinosis, since diagnosis, in 1997.

PIC BY BENJAMIN FURST/MERCURY PRESS (PICTURED: NICOLA WHITEHILL'S HANDS WHICH ARE NOW DEFORMED) A lonely ‘real life Tin Man’ has missed out on ever finding love or having children because she is trapped at home by a rare condition. Nicola Whitehill, 43, had to give up any hope of having a relationship or family aged 24 when she was diagnosed with scleroderma, a rare and incurable condition which causes her skin and blood vessels to harden, and given just 15 months to live. Now the former barrister must spend three hours every day soaking herself in oil lathering on moisturiser before she is able to move her joints at all. SEE MERCURY COPY

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.
×
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.

Leave a Comment

Your email address will not be published. Required fields are marked *