Wednesday, 20 June 2018

Jennifer Moss, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Jennifer Moss, UK.
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Jennifer Moss, UK
Name:           Jennifer Sarah Moss  

Location:       Poulton - Le - Fylde, Lancashire, UK   

Diagnosis:     Scleroderma   

Year of diagnosis:    About 2003-ish  

Age at diagnosis:     22-ish 


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!


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! 

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! 

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. 


2017 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!


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 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 Jen's Facebook video of her having her hair cut, Click here


  
To donate, Click here    
June 2017.  

2018 UPDATE:

Nothing much has changed since last year.

My medications are still the same.

I have been having problems with my feet, feeling like they are on fire. The doctors keep giving me cream for fungal infections but I think I need antibiotics.

It feels like really, really bad sunburn (without the sun) and the skin on the top of my feet keep blistering badly and they itch like sunburn too!!

And so, I haven't been getting much sleep. Although, the only thing that I have found helps a little, is keeping them elevated and cold.


RESEARCH 2018:

I have never been in a trial, though they rang me up to take part once, but it turned out they got names and numbers mixed up!!

I did not have the right symptoms for them. Therefore, I didn't travel 3hrs for a 20 min appointment!!


IN BETWEEN MEDICAL APPOINTMENTS:

I stay at home a lot, as this is easier to manage my symptoms.

I have 2 cats to keep me company. 


 

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 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.  

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.
#HOPE 

Last Update: June 2018

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