Wednesday, 14 June 2017

Denise Holmes, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 14

   
Denise Holmes, UK


Patient Profiles DAY 14

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease 



Denise Holmes, UK

Name:           Denise Holmes 

Location:       Nottinghamshire, UK 


Diagnosis:    

End stage renal  failure, secondary to Scleroderma renal crisis,

Diffuse cutaneous systemic scleroderma

Raynaud’s

Hypertension 


Year of diagnosis:  2010 

Age at diagnosis:     49 


Where / who diagnosed you? 

I was taken to the local hospital who immediately had me transferred to Nottingham City Hospital renal unit with Toxicosis.

Prior to this day, I had been to my GP who said, I had a 24 hour bug even through my BP was high. 


What were your presenting symptoms?  

Chest pain

Pins and needles

Breathlessness

Retching

Nose bleeds. 


How long did it take for you to be diagnosed after first symptoms? 

I am unsure as I wasn’t conscious at the time so it is difficult to say.

I was in Nottingham City hospital for 3 months and I remember  Dr Lanyon (Rheumatology) coming to see me and explaining I had Systemic Scleroderma, but even when he told me, it didn’t register how serious this condition is. 

From then on it was a constant stream of medical students looking at me or having to guess what my condition was.

I understand it’s important that medical students need to be aware of this condition to help them find a cure, but it made me feel like a freak show. 


Current reality: 

Raynaud’s

GI Problems

Hypertension

Bowel problems

Musculoskeletal aches and pains

Reduced movement in my neck, contracture fingers

Unexplained weight loss. 


Please describe your current symptom involvement and management, including any treatments taking and taken: 

Blood tests, lung function, echocardiogram, podiatry and specialist dietitian CT and MRI scans, bone density tests. 

Unfortunately, most of the drugs used for scleroderma I have an allergy to, eg. CellCept (Mycophenolate), Methotrexate and Iloprost etc.

I am coping well with steroids and immuno-suppressants and the other 18 tablets I am taking.

I cannot take over the counter medications or herbal remedies without running it pass the hospital, due to a kidney transplant. 


What are your 3 biggest current challenges due to your diagnosis? 

The movement in my hands due to them being bent and locking with my condition.  

Tiredness / Fatigue. 

Depression.    


What are your 3 top tips for living with your diagnosis?  

Avoid stress
  
Stay positive   

Listen to your body when it is telling you to stop and rest 


What are your 3 wishes for the future?

More awareness.  

More funding for research.  

A CURE!  


Anything which you think is important to share to provide a full understanding of this diagnostic reality:

Unfortunately my GP has failed me quite a few times mostly with tablets that I should not have taken due to me having a transplant, so when they give me tablets or they give me anything else I run it past the two hospitals I attend, just to be on the safe side. 

I did change my GP practice at one point but I couldn’t cope with the GP not knowing anything about my condition and looking everything up on google. And so, I changed back to my first doctor’s because at least they had a little understanding.
     

Huge thanks go to Denise for sharing her scleroderma reality and experience for scleroderma awareness 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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