Friday, 8 June 2018

Vanessa Cummings, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Vanessa Cummings, UK. 
June Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Vanessa Cummings, UK

Name:           Vanessa Cummings
    
Location:       Teddington, Middlesex
    
Diagnosis:     Diffuse systemic Scleroderma
   
Year of diagnosis: 2009
  
Age at diagnosis: 54   

Where/who diagnosed you?
   
Rheumatologist at West Middlesex hospital. Incorrectly, diagnosed with limited Scleroderma at first.  


Presenting symptoms:
    
New Raynaud's symptoms which had not been present before.

Pins and needles in arms.

Swollen and itching hands which were quickly tightening.

Overall chilliness.

Strange cottage cheese texture in under arms.

Aching and painful joints.


How long did it take to be diagnosed?
    
Several visits to the GP who was completely flummoxed.

I requested referral to rheumatology as I suspected rheumatoid arthritis from which my mother suffered very badly. 
  
I paid to see the rheumatologist privately at West Middlesex as it was taking so long to get a referral.

After various tests and paying for three visits he diagnosed limited Scleroderma and told me that it would have little to no effect on my life!
    
I went away and called the Scleroderma helpline. I described my symptoms to Kim Fligelstone.  Kim said that she thought I had diffuse Scleroderma. 

I read up on the Internet and was very shocked and surprised. I went to my GP and asked for a referral to the Royal Free hospital.
    
The GP was at first reluctant but I insisted. It took some months to get to the Royal Free and I was very worried. When I did see the team they confirmed diffuse systemic Scleroderma. 
  
I later developed breast cancer, one year later, which Prof Chris Denton said may have coincided with the onset of my symptoms. 

After mastectomy and chemotherapy my skin symptoms worsened drastically and my skin was completely solid, extremely painful and very itchy. 
    
About 4 to 5 years after onset my skin began to soften. 
   
All the way, through the illness, I have been rigorous with exercise and stretching. I believe this has really helped my skin.

I apply oil liberally to my body. I also juice fresh vegetables daily.


Current symptoms:
    
GERD for which I take lansoprazole and ranitidine.
   
Extreme sluggishness of bowels for which I take fibrogel movicol lactulose and Senna.
  
Excessive wind and flatulence for which I do nothing.
  
I believe my skin is tightening again slowly. I take hydroxychloroquine.
   
I have tinnitus.

I am low on energy sometimes, but not as much as I could be.
  
My mouth is shrinking.
  
I have illoprost 3 monthly. I have asked if I can stretch this to 4 monthly. I do not have ulcers and I do a lot of hand exercises.
  
I'm a poor sleeper. I take diphenhydramine at night to help.

I try to avoid painkillers but usually take two paracetamol at night.
  
When my skin was at its worst I was taking codeine, tramadol, amitriptyline and paracetamol all at the same time!


My 3 biggest current challenges:
    
Lethargy.
    
Re-tightening of hands and arms.
    
Dryness of eyes and skin.

    
Three top tips for living with Scleroderma:
   
Positive outlook.
    
Exercise and stretching– Even when it's the last thing I want to do.
I believe this is why I have greater flexibility and mobility than many.
   
Taking personal responsibility.
Very important indeed with a condition like this.

   
Three wishes for the future: 

A cure for scleroderma.

June 2017. 


2018 UPDATE 

Current SYMPTOMS:  

Fatigue

Recently a lot of stomach discomfort including pain and nausea.

Very sluggish digestive system including bloating, stomach discomfort, wind as well as  problems in passing motions freely.

Tightness and swelling in hands. 
Only 5% of the original tightness left but still uncomfortable. 

Dry skin. 

Raynaud’s symptoms. 

Sweating on even slight exertion. 

Anxiety and inability to tolerate any stress.
I should say though, that I am actually very happy and content. Not depressed. 

Difficulty sleeping. 

Dry eyes.

Much less desire to socialise and interact with others. 

Low libido.


Current Medications:

Sildenafil 25mg twice a day. 1 in morning and 1 with dinner (up until 2 days ago- I am testing out the cause of my horrible stomach pains and think it lies here).

Fluoxetine 40mg (20mg x2) in morn.

Ramipril 2.5mg 1 with dinner.

Hydroxychloroquine 200mg with dinner.

Fibrogel 2 a day.

Laxido 2 a day.

Paracetamol 2x 500mg when needed.

Lanzoprazole 30mg 2 a day one morning, one at 8pm.

Ranitidene 300mg at 8pm.

Diphenhydramine 25 mg 1 at night.

Systane balance eye drops as needed.

Lacrilube eye ointment at night.


RESEARCH 2018

Have you taken part in a research trial?

No. 

If no, please comment why….

I have never been asked. 



IN BETWEEN MEDICAL APPOINTMENTS:

I try to keep busy with my family. We have just returned from a cruise.



Huge thanks go to Vanessa for sharing her scleroderma reality for Scleroderma Awareness Month.   





Current Unmet Clinical Needs 2018: 

CALCINOSIS, Click here  

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here 

GASTROINTESTINAL, Click here



Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here  
Global Patient Profiles Campaign Index, Click here
Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here 
March 2018 Autoimmune Disease Awareness Month, 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

To read my articles:
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, Click here   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. Read more, here
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
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. No wages or admin costs. Thank You.
#HOPE 

Last Update: June 2018
 

   

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