Janet Swerbenski, USA.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
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| Janet Swerbenski, USA |
Name: Janet Swerbenski
Location: McHenry, IL USA
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| Janet Swerbenski, USA |
Diagnosis:
Raynaud’s, Scleroderma 2015
Sjogrens, MCTD 2016
Age at diagnosis:
49 years young
Where / who diagnosed you?
Dr L Esch primary care Dr
What were your presenting symptoms?
Fatigue.
Pain.
Swollen joints.
Digital Ulcers.
SOB- 3+ years seeing my old Dr I fired him.
I got a new Dr, who, on my first visit, listened to my complaints,
examined me (from head to toe, literally,) stepped out, came back and told me
of her suspicions.
She took blood and referred me to a dermatologist and rhuematologist
etc.
Current reality:
I was working full time, I am now on social security disability, on
oxygen 2 lpm 24/7 taking Viagra, plaquinil, low dose prednisone + 25 or so
other prescribed and OTC meds.
What are your 3 biggest current challenges due to your diagnosis?
DISABILITY lugging the oxygen everywhere, and losing my ability to get
up and just go.
What are your 3 top tips for living with your
diagnosis?
Stay warm.
Take it day by day.
Get enough rest.
What are your 3 wishes for the future?
They would find a cure.
Dr's would learn
compassion & bedside manners.
Healthcare was free for
everyone.
2017.
2017.
2018 UPDATE:
My symptoms are the same with more muscle
involvement.
My Sjogrens symptoms are causing havoc on my teeth,
jaw, eyes etc.
I am now taking sildinfal 3 times a day for my
Raynaud’s symptoms.
I have Oxygen 1-2 lpm as needed, checking pulse ox twice
a day.
I have recently becoming quite depressed as my Mom
passed, as well as another close family member. But I know that life goes on.
I currently see seven different “ologists”, Doctors,
for my best care management.
RESEARCH
2018:
I have not taken part in any clinical trials, but I
did sit on a forum in Dallas with the Scleroderma Foundation.
IN BETWEEN MEDICAL APPOINTMENTS:
I try to keep busy by gardening, walking my dog, and
baking.
Huge
thanks go to Janet for sharing her scleroderma reality for Scleroderma Awareness Month.
Current Unmet Clinical Needs 2018:
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
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| 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.
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| 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.
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| Sept 2017 |
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| 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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