DAY 18 Scleroderma Awareness Month: SKIN, HANDS, MOUTH, DENTAL

DAY 18 Scleroderma Awareness Month: SKIN, HANDS, MOUTH, DENTAL

Day 18 Scleroderma Awareness month

DAY 18  Scleroderma Awareness Month: SKIN, HANDS, MOUTH, DENTAL

I focussed on the Skin and its management for Day 10 Scleroderma Awareness Month also. To read the post, click here

Today’s image, I have focussed on the physical effects which skin tightening and stiffness can cause. With diffuse scleroderma, most of the entire skin on the body can be affected. However, it is important to note that no two scleroderma patients present with the exact same set of symptoms.

I discussed the ACR – Eular guidelines for the diagnosis and classification of Scleroderma in Day  6  Scleroderma Awareness Month, to view the post click here

The severity of hand involvement can differ from patient to patient. Some patients experience finger curling, as can be seen by the photos in the image, with thanks to the UK patients, Vannessa, Corah and Lynne, for sharing their photos.

Personally, my left index finger is starting to curl, with my other fingers being extremely stiff and I am unable to make a fist with either hand. Digital ulcers, calcinosis and pitting to the fingers makes for extremely painful, sensitive, not fit for purpose hands!

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

Every task, including the most basic eg. getting dressed, holding a pen / toothbrush / hairbrush / keys / taps / knife and fork…… everything, is extremely challenging for sore, delicate sclerodactyl hands.

So far, surgical attempts to straighten the fingers of scleroderma patients have given disappointing results, when combined with the distress and discomfort to the patient. However, this remains a pioneering area of study for the surgeons across the globe.

Some scleroderma patients may experience tightening of the skin to their face, as well as, thinning of the lips, with deep lines around the mouth. The soft tissue and skin of the mouth can also be affected.

Mouth opening can be very difficult, making a dentist appointment timely and requiring a patient, understanding, scleroderma informed dentist. Thanks to Sarah, facebook MeandSclero, for sharing her image to highlight the difficulty in mouth opening.

The 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 abscess.

On a personal level, I attend dental hygienist appointments every three months, combined with appointments with my dentist every six months, and twice daily brushing and flossing, in between. I feel very blessed for the dental care team which I have, and I am extremely grateful for their patience and expertise with helping me manage my dental issues brought about by scleroderma.

It is also of huge comfort for me to know that should I have any dental problems, I will be viewed as an emergency case due to my diagnosis. So far, I have had 3 tooth extractions due to scleroderma. One of which, can be seen in the image at the top of the post. My dentist joked with me at my last check up appointment, that my dental issues have improved, as it is just easier to have my teeth removed!… believe me, it really was a last resort on all 3 occasions, to have an extraction, having experienced pain unlike it.

I am now extremely careful with the foods which I eat, choosing softer, easier to chew foods, as the best option. Scleroderma is not having my two front teeth, or any more teeth!!

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.

One comment

  1. Bethy says:

    Thank You for another great article, Nicola!

    I have a couple of questions for you:
    In Britain to you have universal dental coverage similar to your universal medical coverage?

    When you get the extractions, are you then getting implants in the place of the teeth extracted?

    Thank You again,
    ~Bethy

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