Jennifer
Moss, UK
Patient
Profiles DAY 18
June
Scleroderma Awareness Month 2017
 |
| Jennifer Moss, UK |
Name: Jennifer
Sarah Moss
Location: Poulton - Le - Fylde, Lancashire, UK
Diagnosis: Scleroderma
Year
of diagnosis: About
2003ish
Age
at diagnosis: 22ish
Where
/ who diagnosed you?:
Blackpool Victoria Hospital , Dr Rao (I think)
What
were your presenting symptoms?:
My left leg had totally solidified and swollen.
I also had lumps on the left side of my abdomen, where, if I leant to the right, the lumps would be very visible!
I also had lumps on the left side of my abdomen, where, if I leant to the right, the lumps would be very visible!
How
long did it take for you to be diagnosed after first symptoms?
My hands and wrists became extremely swollen.
The nurses next door to the pharmacy I worked in, thought I had sprained them somehow, so bandaged them up quite tightly -which didnt help!
The nurses next door to the pharmacy I worked in, thought I had sprained them somehow, so bandaged them up quite tightly -which didnt help!
Then about a couple of months later, my knees
started swelling up as well.
I was going to the doctors every few weeks by this
point as I could barely drive my moped or do my job - standing up all day,
taking in and handing out prescriptions.
All the GPs kept saying was 'its a virus, there’s
nothing we can do!'
Eventually, I got the GP to do a blood test and it
showed I had an extremely high rheumatoid factor. I was then referred to Dr
Halsey in the Rheumatology unit at Lancaster Royal Infirmary.
About 5 months later, my waist between my ribs and
hip on the left side, started turning into lumps and I got a little numb patch
about 3cm x1cm in the middle of my calf.
So one day, I got my mum to take me to A&E at
Blackpool Victoria Hospital where I only waited about an hour to be seen, but
my leg turned from relatively normal to totally solid and swollen.
They admitted me more because of my lumps, than my leg!
They admitted me more because of my lumps, than my leg!
A month later, I found out by luck, what it was,
because a nice junior doctor came to see me. I was a mystery, so I got all the
classes and curious doctors coming to have a look.
After a couple of biopsies they referred me to the Scleroderma
Unit at the Royal Free Hospital in London to see Prof Denton.
Current
reality:
11 different tablets, 2 injections, massage therapy
every 2-3 weeks
What
are your 3 biggest current challenges due to your diagnosis?
Mobility
Fatigue
Pain
What
are your 3 top tips for living with your diagnosis?
Get as much sleep as you can whenever you can - if
you are tired, nap!
Distract your brain - try not to think about your situation, it'll only depress you!
Do not force yourself - if you feel too rough to do something, dont do it!
Distract your brain - try not to think about your situation, it'll only depress you!
Do not force yourself - if you feel too rough to do something, dont do it!
What
are your 3 wishes for the future?:
That I
can sleep for a full night and wake up rested every morning!!
That I can go camping with my friends again
That I can go camping with my friends again
That I would be well enough to start enjoying (and
having a) life again!
Jen recently underwent a sponsor hair cut and raised over £600 for medical research at the Scleroderma Unit. To view her Facebook video of her having her hair cut, Click here
Huge
thanks go to Jen for sharing her scleroderma reality and experience for
scleroderma awareness month, and for her amazing sponsored haircut fundraising.
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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