Sunday, 16 April 2017

The Skin, Scleroderma Raynaud's, Autoimmune Rare Disease - Nicola Whitehill

 
The Skin
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  




 


The skin is the largest organ in the body and is affected in most scleroderma patients. 

The exception to this rule is the limited subset version of scleroderma patients.

See Day 1 of my Scleroderma Awareness Month 2016 campaign. 




At the time of my diffuse scleroderma (dcSSc) diagnosis in 1997, I presented with extremely tight skin across my chest, arms, hands, face, legs … all over my body. My hands and fingers were puffy with tight, itchy, shiny skin and painful joints. 

I was unable to make a fist and could not remove bottle tops, the lids of jam jars, or the like, and had other symptoms (joint pain, gastro-intestinal, pain, lethargy, fatigue, and so on).

I discussed this on Day 4   


 


After years of chemotherapy and immunsuppressants — I am now 12 years cytotoxic drug free — my skin has reversed to 97% normal healthy skin, according to my last medical assessment in May 2016, with the dedicated scleroderma world expert Professor Chris Denton. 


The Modified Rodnan Skin Score (mRSS) is the standard measurement assessment test used to identify scleroderma skin activity. 
 

A skin score is important because:
  • Skin score often peaks within one year of dcSSc onset
     
  • There is an association between severe skin involvement and burden of organ-based complications
  • Death or major organ-based morbidity occurs in 50% of dcSSc cases within 3 years of disease onset
  • Stabalization or improvement in skin sclerosis within 2 years of diagnosis may confound studies designed to prevent skin score worsening
  • Latent Trajectory Modelling identifies distinct subgroups defined by skin score

To learn more about this, Click here

I have a daily symptom management routine that includes bathing and moisturising my skin. 

For the bath, I use liquid petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient cream all over my body. 


 


I use sensitive skin skincare laundry products and only wear clothing that is soft against my skin. Sadly, my Armani jeans have remained at the bottom of my wardrobe since diagnosis, as denim is too heavy against my skin, causing my inner Bond girl to go AWOL.

As with most things scleroderma-related, nothing is that simple, and although I have regained the elasticity and texture of healthy skin, I am challenged with skin-related symptoms caused by the scleroderma, such as calcinosis, telangiectasia, Bowen’s disease, and a possible basal cell carcinoma on my forehead.

I discussed these skin challenges on Days 10, 18, 19, 27 and 28 of Scleroderma Awareness Month. 

The mystery of the calcinosis/basal cell carcinoma (BCC) will be investigated in two weeks time, which I am trying to remain calm about, having had a very impromptu, if brief, meltdown in a phone call with the local dermatologist’s secretary to book the appointment last week!

I had spoken with this secretary a few years ago, when this calcinosis/BCC mystery commenced its journey, and she remembered me, so luckily she understood that I was having an uncharacteristic, albeit embarrassing, reaction, and she was most kind and supportive. I have already purchased the chocolates to take to her on the appointment day!

I know that most of my fellow patients will wholly understand my little blip when booking another medical appointment due to another complication of scleroderma. 

I also know that I am very blessed to have gotten to year 19 without a skin biopsy, and I am in awe of my fellow (much braver than I) patients, who have been subjected to skin biopsies when their skin is tight and inflamed.

The small skin patch of Bowen’s on my left knee is thought to have been caused by sun damage. I cannot stress enough how important it is to wear sun protection, especially if you are taking — or have taken — any of the chemotherapy and immunotherapy drugs widely used for scleroderma symptom suppression.  


I went into more detail about this in 'The Magic of Summer'.


I discussed my annual monitoring tests, here 


As with the management of most of my Raynaud’s and scleroderma symptoms – prevention is better than cure, since there is no cure. 


So, I now avoid being in any direct sunlight in the hope of preventing further unwanted scleroderma skin complications, as, I want to feel good ~ living the dream, scleroderma style.  




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



  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

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

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', Click here 

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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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      

Diet and nutrition, Click here      


Raynaud's- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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. Read more, here    


  

World Scleroderma Day 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click here   

World Scleroderma Day 2015, 29th June.  


James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       


The Skin
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  









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