Saturday, 18 June 2016

DAY 18: Skin, Hands, Mouth, Lips, Scleroderma Awareness Month 2016

DAY 18: Skin, Hands, Mouth, Lips, Scleroderma Awareness Month 2016 
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.




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, click here, 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!! 



This article was originally published here  in my Column with Scleroderma News. 


I went into more detail about these clinical unmet needs in my one of my articles for Rare Disease Day 2017, where the theme was ‘With Research, possibilities are limitless’. Click here

To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

skin involvement click here
skin tests click here
skin cancer in scleroderma click here

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
 
May 2017 Total
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld
29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here  

Scleroderma Awareness Campaign 2016 Index. Click here
 
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here
To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here  

Please use the icons below to share this article #SclerodermaAwareness

No comments:

Post a Comment