Denise
Holmes, UK.
June
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
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.
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 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:
ALL being, crucial factors for best practice management and care.
Raynaud's, Click here
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.
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:
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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