Sunday, 18 June 2017

Jennifer Moss, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 18


Jennifer Moss, UK

Patient Profiles DAY 18

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease
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!


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. 


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!


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 her Facebook video of her having her hair cut, Click here

  
To donate, 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   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, 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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

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    



World Scleroderma Day 29th June 2016, 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:
The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  


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


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


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - 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  


#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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