Saturday, 18 June 2016

DAY 18: Skin, Hands, Mouth, Lips, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease


DAY 18: SKIN, HANDS, MOUTH, DENTAL
Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease



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


I focussed on the Skin and its management for Day 10 Scleroderma Awareness Month 2016.


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 will 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 2016. 

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, Vanessa, 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! 



Every task, including the most basic eg. getting dressed, holding a pen / toothbrush / hairbrush / keys … 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.  

Huge thanks to USA patient Karen for sharing her images. 

As well as, check out USA patient Jacob, to see his surgical advances. 





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. 

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!!  

To read more of my article about the skin:



skin involvement, Click here
skin tests, Click here
skin cancer in scleroderma, Click here



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        



RARE DISEASE DAY:

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. 

VIDEO



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
#Raynauds
#RareDisease  

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. 
#HOPE 


 

Last Update: April 2018




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