DAY 28 Scleroderma Awareness Month: Complications, Skin Discoloration, Soft Tissue Damage

DAY 28  Scleroderma Awareness Month:  Complications, Skin Discoloration, Soft Tissue Damage

Day 28 Scleroderma Awareness month

DAY 28  Scleroderma Awareness Month:

Complications, Skin Discoloration, Soft Tissue Damage

As discussed in the first few days of Scleroderma Awareness Month, systemic scleroderma can affect any part of the body.

See DAY 1  — Scleroderma Awareness Month to learn more about Scleroderma subgroups.

See DAY 2 and DAY 3 of my Scleroderma Awareness Month series about body parts that are affected.

The skin is the major organ affected by scleroderma.

I focused on the skin in the DAY 10 and DAY 18  Scleroderma Awareness Month posts.

As highlighted in my DAY 18 Scleroderma Awareness Month post, gum recession can also be experienced, causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth.

Today’s image (above), shows shrinkage to the soft tissue around the mouth and lips, causing thinning of the lips and making mouth opening very difficult.

Skin symptoms include tightness and itchiness of the skin, along with some patients experiencing hypopigmentation (vitiligo), whereby skin patches can appear with the skin losing its natural colouring pigmentation. To read more about this, and the UK patient Sarah (me and Sclero), click here.

Scleroderma can also affect and alter the soft tissue in the body, with symptoms such as cellulitis, as seen in the above image, being an added extra, painful complication. Thanks to UK patient, Caroline, for sharing her photo for awareness purposes.

Calcinosis can often develop in the soft tissue at pressure points. For more information on this, please see my DAY 19 Scleroderma Awareness Month: Calcinosis blog post.

Tenderness to the soft tissue in the feet can impair mobility as well as, limiting footwear choices. I focused on mobility along with painful swollen joints on DAY 20 Scleroderma Awareness Month: Bones, Joints, Muscles.

All in all, the diffuse subset of Scleroderma affects the entire body, including nerves, glands, and the entire musculoskeletal system. No cure is currently available. Treatments target symptom suppression and prevention, with the hope that irreversible life threatening damage can be prevented.

Investment in global medical research is crucial and urgent, to improve the scleroderma patient experience.

Note: Scleroderma 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 blog article are not those of Scleroderma News and are only intended to spark discussion about issues pertaining to the disease.

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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