Sunday, 16 April 2017

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

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

#SclerodermaFreeWorld  #RaynaudsFreeWorld  



  


The skin is the largest organ in the body and more often than not, will be affected by scleroderma, as the name ‘sclero’ - thickening, ‘derma’ - skin, implies. 

The exceptions are a SINE scleroderma diagnosis, as well as, a limited scleroderma diagnosis, could present with little or no skin involvement. 

Here is a visual from my June Scleroderma Awareness Month Campaign 2016.  




I wrote a more general article about skin involvement and the skin symptoms which I presented with in 1997, Click here

One of the usual diagnostic tests carried out to determine a scleroderma diagnosis is a skin biopsy. 

Other tests, include those which I discussed, here

I am delighted to have avoided a skin biopsy- an invasive painful test on my scleroderma tight sensitive skin, for 19 years now. 

However, the growing lump on my forehead of the last three years has been a cause for concern and intrigue, further to me being prone to calcium lumps, which is now one of my long term scleroderma symptoms. 

Although calcinosis is not as life threatening as organ damage, it can be extremely painful and contribute to organ damage. 

It is my view that calcinosis is one of the biggest unmet needs of the stable scleroderma patient. I discussed in more detail about calcinosis, here

 

 
The lump on my forehead appeared as most of my calcium lumps have appeared – pain and tenderness to the skin at the site of injury, and then gradual discolouration to a white-ish colour, similar to a spot. 

Although, they are actually a lot different to a spot, as spots can be squeezed and these lumps can not, and which, I have hours of experience of squeezing and prodding, and the scars to show for it.

The start of the red lump can just about be seen on this photo, which was used for Raynaud’s and Scleroderma awareness in The Daily Mail in 2013. View article, here 




Further to the lump’s appearance I was referred to my local Dermatology clinic for an assessment and measurements to be taken. 

I was advised at this time, that a skin biopsy would be an option, in an attempt to identify more about the lump. 

However, due to my years of experience with calcium lumps, I chose to delay any invasive surgery, mindful that my skin does not repair as quickly upon injury, and another scar, this time on my face.

As well as, I am susceptible to infections due to 7 years of immunosuppressant use, even though I am now 12 years immunosuppressant free. 

Being a long term patient with a rare disease with no cure, and little known about the cause, has taught me that ‘prevention is most certainly better than cure’ especially when it comes to infections which may have been avoided, such as coughs and colds.

My gastro-intestinal system is still in recovery from having to have taken continuous antibiotics for my digital ulcers, prior to taking bosentan, along with the damage to my GI system caused by scleroderma. 

I wrote about my diet changes, here

As I stated above, I really am elated that I managed to get to year 19 of my diffuse scleroderma diagnosis without having to have a skin biopsy. 

And, I am extremely grateful to the Dermatologist Doctor, Dr Tiberiu Bontea, at Ormskirk General Hospital (my local Dermatology center) for his expertise and patience over the last 18months, whilst I plucked up the courage to have the procedure, as advised from the outset.

On the day of the procedure, I was very much comforted knowing that Dr Bontea had taken into account my scleroderma ‘special needs’ – tight skin and compromised blood supply combined with slow healing tissue repair issues, and so, he used a type of anaesthetic which would not cause extra contraction of my blood vessels (lignocaine).

The medical requirement of this procedure shows the importance and need of a ‘shared care multidisciplinary approach’ for best practice and care for the scleroderma patient. 

I wrote about the necessity of expert specialist centers, here 

The entire procedure took about 20 minutes, with only slight discomfort at the point of entry of the needle administering the anaesthetic, lasting a minute or so. 

Dr Bontea kindly let me look at the ‘specimen’ which had been excised, prior to it being sent for further testing. It did not look like a calcium lump.

I am extremely grateful to Dr Bontea and the nurses for making the procedure as pleasant as it could be. 

As well as, I am very grateful for my fellow long term scleroderma survivor friend Leyla, for her support, when I was having to accept that the biopsy road was the only avenue available, and of course, Thank You to all of my facebook global scleroderma friends for your comments and support and for sharing your personal experience of this scleroderma ‘added extra’. 



This photo was taken at the end of the procedure, and 4days later there is little change. 

In the meantime, I am under house arrest in an attempt to provide the best conditions for a ‘speedy’ healing recovery. 

Living the dream, scleroderma style, hoping for a cure.




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


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

#SclerodermaFreeWorld  #RaynaudsFreeWorld  










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