Wednesday, 7 June 2017

Vanessa Cummings, UK - June Scleroderma Awareness Month 2017, Raynaud's, Autoimmune Rare Disease, Patient Profiles DAY 8


Vanessa Cummings, UK

Patient Profiles DAY 8

June Scleroderma Awareness Month 2017

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. Who 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      




Huge thanks go to Vanessa for sharing her scleroderma reality for

#SclerodermaAwareness month.    

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    


INDEX to Scleroderma Awareness 2016 Campaign, Click here     




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   

Becoming a Patient Research Ambassador for the NIHR, 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    


Diet and nutrition, Click here     


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, 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  
  


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

Links

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. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018




   


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