Denise
Holmes, UK
Patient
Profiles DAY 14
June
Scleroderma Awareness Month 2017
 |
| 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.
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
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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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