Tuesday 28 June 2016

DAY 28: Soft tissue, Cellulitis, Gum Recession, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

 DAY 28:  Complications, Skin Discoloration, Soft Tissue Damage 
 Scleroderma Awareness Month  2016
Raynaud's, Autoimmune Rare Disease

DAY 28: Scleroderma Awareness Month 2016
Complications, Skin Discoloration, Soft Tissue Damage

As discussed in the first few days of Scleroderma Awareness Month 2016, systemic scleroderma can affect any part of the body.

See  DAY 1  Scleroderma Awareness Month 2016, Scleroderma subgroups.

See DAY 2  and  DAY 3  Scleroderma Awareness Month 2016, body parts affected.

The skin is the major organ affected by scleroderma.

I focussed on the skin on DAY 10 and DAY 18  Scleroderma Awareness Month 2016 Campaign. 

As highlighted in DAY 18, Scleroderma Awareness Month 2016, gum recession can also be experienced causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth. 

The above image, shows shrinkage to the soft tissue around the mouth and lips, causing thinning to 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. 

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

Calcinosis can often develop in the soft tissue at pressure points. 

For more information on calcinosis, DAY 19 Scleroderma Awareness Month 2016 Campaign. 

Tenderness to the soft tissue in the feet can impair mobility as well as, limiting footwear choices. I focussed on mobility along with painful swollen joints on DAY 20

All in all, the diffuse subset of Scleroderma affects the entire body, including nerves, glands, and the entire musculoskeletal system. 

An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

To read my articles: 

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here      

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here     

Importance of an early diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here       

Raynaud's, Click here    

World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   

Why Global Collaboration is important to the Rare Disease Patient, Click here      

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016

Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 


Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

View video, here

Preamble - here 

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017

I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  

#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma

Living the dream, scleroderma style.  

Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  

100% of your monies will be used for medical research purposes only. Thank You. 


Last Update: April 2018

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