Thursday 7 June 2018

Janet Swerbenski, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Janet Swerbenski, USA. 
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Janet Swerbenski, USA
Name:           Janet Swerbenski   
Location:       McHenry, IL USA
Janet Swerbenski, USA
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?



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.  
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.


I have not taken part in any clinical trials, but I did sit on a forum in Dallas with the Scleroderma Foundation.


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  






RAYNAUD'S, 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.  

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:
Importance of an early diagnosis, Click here      
Taking Part in Clinical Research Trials, Click here     

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here    

Expert Specialist Centres, Click here      
My Skin is Cured from Scleroderma, Click here       
UK Guidelines for Managing and Treating Scleroderma, Click here        

Fatigue, Click here         

Mobility, Click here      

Diet and nutrition, Click here     

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  
#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.

Last Update: June 2018

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