Sheryl
Bishop, USA.
Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
 |
| Sheryl Bishop, USA |
Name: Sheryl
Bishop
Location: Heights,
CA USA
Diagnosis: Systemic
Diffuse Sclerosis
Year of diagnosis: 2005
Where / who diagnosed you?:
Hand specialist in West Covina CA USA
What were your presenting symptoms?
Both hands would turn purple.
Started swelling.
I thought it was Carpal Tunnel Syndrome, from
being a Dental Hygienist.
How long did it take for you to be diagnosed
after first symptoms?
About 6 months.
I was sent to a hand specialist.
He ran all tests for Carpal Tunnel in both
hands, while referring me to a rheumatologist because he really didn't think
that's what I had.
All tests came out negative for Carpal
Tunnel.
I went to a Rheumatologist, who ran blood
work.
And Bam........Scleroderma antibodies.
She then referred me to Dr Clements at
UCLA.
2017 reality:
As of today, I have Raynaud’s Phenomenon with
ulcers which when bad, I receive Flolan infusions.
I take Adcirca and Tracleer.
I have GERD confirmed by Mannometry, Bravo Ph
test, Endoscopy, Swallow tests. Treatment with Omerapozole 40mg 2x daily and
try watching my diet.
I have skin tightening. Very little Sclerodactyl
symptoms.
Some joint pain recently. I take Myfortic 720mg
2x a day.
I have pulmonary fibrosis which they want to
start me on rituximab infusions. Don't have details yet.
I've had a right heart cath. No Pulmonary
Hypertension.
Starting with some clubbing of fingers. I had a
left hand Digital Sympathectomy for ulcers.
Also have Hashimoto's Disease take150mcg a day.
What are your 3 top tips for living with your
diagnosis?
Faith.
Hope.
Helping others.
What are your 3 wishes for the future?
To help find a cure, be cured, and that
Scleroderma, and all coexisting auto-immune diseases are non existent.
This is a very terrible disease which does not
get enough recognition.
It is invisible, therefore, if you dont look
sick on the outside many people have no idea how serious and involved our
internal organs are, which in many cases are life
threatening.
Many people have lack of compassion also,
because it's not always visible on the outside.
Fatigue and pain causes us to miss out on many
activities by cancelling. Eventually you stop getting invited. I feel
this also causes depression and anxiety.
"A meal without wine is like a day without
sunshine." Italian Proverb Love, Sheryl.
June 2017.
I like to try and exercise, do crafts, and think of ways I can help others with Scleroderma. Whether it be a fundraiser, (which I've only done one so far), sit with a friend during an infusion, crafting, movies, or reading.
June 2017.
2018 UPDATE:
As of today my
Scleroderma symptoms have progressed some.
I'm going on 13 years,
in July, since diagnosis.
Current SYMPTOMS:
Heart burn, Acid Reflux,
Pulmonary Fibrosis, Gastroparesis, Digital Ulcers, Raynaud’s, Calcinosis, Skin
tightening, resorption of fingers.
2018 RESEARCH:
No Research studies
in 2018.
I took part in one
in 2010 for Digital Ulcers.
It was a double
blind trial where you take a pill orally for 20 weeks.
At the end of that
time you are given the real medication.
When my 20 weeks
were up, I was given the real medication and found out very quickly I was on
the placebo. I couldn't tolerate the drug and I stopped the trial.
My doctors are at
UCLA and so was the trial. Travel distance was 24 miles and took 2 hours to get
there because of traffic one way.
In 2017, I
participated in a study for Pulmonary Fibrosis.
It was an IV Infusion
and double blind. The first year, you go once a month for about a two hour
infusion. Then the second year you are given the real medication.
I was in the trial
for about six months and didn't feel well so I was taken out of the study.
Don't know what I was on, Placebo or the real medication because the trial is
sill going on. Again, same traveling situation.
Same place,
distance, and time. I am done with trials for now.
Both trials didn't
agree with me and I felt very nauseous.
But the positive
side is you do meet many lovely people that you would never have met.
Trials are necessary
in allowing research to be done to help find a cure.
Many successful medications we use now wouldn't be available if it weren't for these trials.
Many successful medications we use now wouldn't be available if it weren't for these trials.
A double bonus is at
the end, if the medication proves to do what they want, the patient gets it for
free. Not sure if there is a time limit or not.
So all in all, my
experience was positive and negative.
Maybe I will try
another time in the future, depending on what it involves.
IN BETWEEN MEDICAL
APPOINTMENTS:
I like to try and exercise, do crafts, and think of ways I can help others with Scleroderma. Whether it be a fundraiser, (which I've only done one so far), sit with a friend during an infusion, crafting, movies, or reading.
Huge thanks go to Sheryl for sharing her
scleroderma reality and experience for Scleroderma Awareness Month, and HUGE
thanks for all that Sheryl does for the global scleroderma community
worldwide.
Please Like her
Facebook Page 'Sclero Sisters Fighting for A Cure', which she hosts with
another scleroderma super-heroine, Aly Proano, 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:
ALL being, crucial factors for best practice management and care.
Raynaud's, Click here
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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