Sunday, 18 June 2017

Jennifer Moss, UK, June Scleroderma Awareness Month, Raynaud's, RareDisease, 2017 Patient Profiles, DAY 18

Jennifer Moss, UK, June Scleroderma Awareness Month 2017 Patient Profiles   

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?   




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       

Week 1 Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 – Patient Profiles Campaign, Click  here

Week 2 Scleroderma Awareness Month, Raynaud's, Rare Disease, Patient Profiles 2017, Progress in medical research, Click here

2017 INDEX Scleroderma Awareness Campaign Patient Profiles Click here      

INDEX to Scleroderma Awareness 2016 Campaign, Click here 

To read my articles  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here

World Scleroderma Day 29th June Click here  

Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.


Living the dream hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 

Thanks to USA patient Sharon Esposito for sharing her wonderful creativity

Please use the icons below to share this article #SclerodermaAwareness  

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief

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