Wednesday, 14 June 2017

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

Denise Holmes, UK - June Scleroderma Awareness Month 2017 Patient Profiles  

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 and 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 and retching and 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. 

Please describe your experience (did you see GP? Blood tests etc) Current reality: 

Raynaud’s, GI Problems, Hypertension, bowel problems, musculoskeletal aches and pains, reduced movement in my neck and contracture fingers and 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). 


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.  


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 doctors 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        

Week 1 Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 – Patient Profiles Campaign, Click   here

2017 INDEX Scleroderma Awareness Campaign Patient Profiles Click here      

INDEX to Scleroderma Awareness 2016 Campaign, Click here 

To read my articles  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here

World Scleroderma Day 29th June Click here  

Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.
June 2017 Total


Living the dream hoping for a cure

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#RareDisease #Hope #Belief 

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