I’ve Found My Own Scleroderma Tooth Fairy

I’ve Found My Own Scleroderma Tooth Fairy

Living the Dream Scleroderma Style

Here in the Northern Hemisphere, the summer holidays have finished. However, as scleroderma patients, we know all too well that we do not have a holiday from this diagnosis.

More often than not, the management of the multi-complex symptoms makes for a full-time job. I have previously likened my experience to that of an Olympic athlete.

However, this year, I feel that my experience has been more like a circus performer as I’m juggling the many demands my disease brings.

Although the warmer temperature during the summer months is most welcome, a different set of symptoms present themselves, with pain, fatigue, and “tin man body” being a constant.

I try not to let the seasonal change from summer to autumn sadden me. I know that I will have to prepare for battening down my hatches, and a return to my polar-style outfits.

This year, I have been very fragile, having started the year with shingles. At the start of spring, I wrote about the Pandora’s box of this rare disease and my skin cancer experience. I also wrote about my ongoing dental issues due to my diagnosis.

In this column, I will focus on the dental and oral implications of this disease and my recent dental visits. Tightening of the skin on the face, combined with shrinkage to the soft tissue around the mouth and lips, causes thinning of the lips and deep lines around the mouth.

This change in facial shape and appearance can cause multiple complications, including tooth loss due to the recession of the gums and tooth root reabsorption. A dry mouth symptom can lead to mouth infections and tooth abscesses. Mouth opening can be very difficult, so a patient, understanding, and scleroderma-informed dentist is needed.

I am extremely grateful to my dentist, Dr. Andrew Booth, and dental hygienist, Louise Doran, for their continued patience and expertise. I see Louise every three months, combined with appointments with Andrew every six months. However, this schedule is often interrupted because of an emergency appointment due to a flare caused by an infection.


Day 28 Scleroderma Awareness Month 2016.

Day 18 Scleroderma Awareness Month 2016.

I have difficulty holding a toothbrush due to the physical limitation in my hands and fingers. Over the years, I have developed gum recession, which is excruciatingly painful and requires tooth extractions and results in increased susceptibility to infection due to a continually dry mouth.

I am devastated to have had three tooth extractions due to scleroderma. However, in the bigger picture, I know that this is a small irrelevance compared to some of the organ devastation that other patients experience.

Throughout this year, my gum recession has deteriorated. Last week, during my appointment with Louise, I nearly passed out. I had pain shooting across my face, along to my ear, caused by the exposure of my teeth’s roots, due to gum recession.

(Courtesy of Nicola Whitehill)

After a few days’ of recovery, Andrew very kindly applied a sealant over the exposed part of the teeth. So far, this has proved successful, and I am elated to be “face-ache free.”

(Courtesy of Nicola Whitehill)

I am extremely cautious with the foods I eat, choosing softer, easier-to-chew foods, as my best option. The scleroderma tooth fairy is not having my two front teeth or any more of my teeth! Dental and mouth involvement is most definitely a current unmet clinical need.

Several of the patients included within my Scleroderma Awareness Month 2017 and 2018 campaigns reported dental and gum symptoms as one of their many current health challenges.

Other unmet clinical needs include:

Investment in medical research is crucially needed.

I am honored to be a patient research ambassador with the National Institute for Health Research.

Overall, for optimum patient care:

In the meantime, I continue to remind myself that my job today is to simply get better, with the scleroderma tooth fairy away, on a permanent holiday.

Living the dream, scleroderma style.

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Coming Up: October is Raynaud’s Awareness Month

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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.

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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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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