Thursday, 14 June 2018

Denise Holmes, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Denise Holmes, UK. 
June Scleroderma Awareness Month 2018. 
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 though my blood pressure 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. 

June 2017. 


2018 UPDATE:


My medication has not changed.

I have had a trapeziectomy and stabilisation recently, on my thumb. 






The recent stress caused by flooding at my home has caused problems with my kidney again.


RESEARCH 2018:

I have not taken part in any research trials.  


IN BETWEEN MEDICAL APPOINTMENTS:

I enjoy spending time with my family and my dogs.

I enjoy making and creating, with various crafts! In particular, floral door décor.

This is a hoop which I made for scleroderma awareness, but sadly, it was destroyed by the recent flood at my home.
 



   

Huge thanks go to Denise for sharing her scleroderma reality and experience for Scleroderma Awareness Month. 

Please hold Denise and her family in your prayers for a speedy return, to their property being restored and dried out!  

 
 
 
 
To read my articles: 
 
Current Unmet Clinical Needs 2018, Click here 
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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