Tuesday, 26 June 2018

Jan Petrie Procter, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Jan Petrie Procter, UK.
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Jan Petrie Procter, UK
Name:           Jan Petrie Procter 


Location:       Shrewsbury, Shropshire 


Diagnosis:     Diffuse Systemic Sclerosis, Raynaud's 


Year of diagnosis:    July 2014

Age at diagnosis:     44 


Where / who diagnosed you?

Royal Shrewsbury Hospital


What were your presenting symptoms?
 
Digital ulcers. 

I was diagnosed with CardioMyopathy (Heart Failure) in 2012. Until that time I was extremely healthy and had had no major illnesses. 

The cause of the heart failure is still unknown although my doctors have suggested the most likely cause is having contracted a virus at some point.  

Managing my heart failure took a couple of years but eventually we got the condition pretty much under the best control possible and life continued, albeit I had to stop work for a while due to my health.   

Approximately one year on, in 2013, my fingers were very painful, with increasingly severe ulceration. 

Tips of a couple of fingers were black, others had digital pitting. 

A number of visits and pleas for help to the GP and also the practice nurses came to nothing.  

In desperation, I was doing my own research into the problems I was dealing with regarding my fingers, such as extreme pain when I had hardly knocked them.   

I was then rushed into hospital in an unrelated incident, and happened to have a doctor see my fingers, I was immediately admitted to hospital, where I stayed for five weeks – yes five long weeks in the middle of the summer – not knowing what was wrong – why I was there – with very sick people – and feeling sicker than ever, myself!


2017 reality:  

From there on, I have been diagnosed with Scleroderma and Raynaud’s. 

I went into hospital to receive a course of Iloprost Infusion – which entailed a one week stay, with limited success.

The cold weather is a nightmare for my fingers, and I am often seen wearing plasters on several, if not all, of my fingers.   

Nothing works for this, and I have tried everything including heated gloves, hand warmers etc. If my fingers are cold, they are cold, even if the rest of me is warm. 

I have been approved to receive Illoprost treatments whenever my fingers are bad, or in the autumn as a preventative measure. 

I have problems receiving sufficient Illoprost though, as it makes my blood pressure drop so low (55/45 at one point).

 

 


I have telangiectasia – red marks on my face, chest and a couple on my shoulders.

Currently I have a tan which really helps to cover them and although I intensely dislike them, there are worse things to have.  

I have exceedingly dry eyes – waking up in the morning my eyes are unable to open until I have used eye drops to lubricate them.

I also use a gel at night before I sleep, but this has limited effectiveness.  

My skin is very dry – its kept manageable by using products like Aveeno. I moisturise my face at least three times a day.   

My hair is so thin now, again, something I intensely dislike, but just put up with.   

Many dental problems – my gums are receding, I’ve had five teeth out in the past two years.

I have to rest during the day – a little nap after work is absolutely essential if I am to do anything in the evening (ie cook dinner or participate in family life).   

I have regular appointments with my rheumatologist and cardiologist, just for check ups. We have planned an Illoprost infusion for November.    

Work have been absolutely fantastic. I have a heater right next to me, and my poor boss must despair at the temperature sometimes – most people who walk in to the office comment on the temperature.

I work on a RAF base in the military transport maintenance section.

The support which I have received within my team, is probably the main reason I have been able to continue working, flexibly around my symptoms.   


My current biggest challenges include:   

Managing to do normal things with such painful fingers eg. typing, opening jars, washing hair etc.  

I hate the way I look when my skin is particularly tight, dry, sore and flaky.   

Tiredness.


My wishes for the future:   

Yes, sometimes I feel desperately frightened for the future.

Googling symptoms, life expectancy, outcomes, etc has previously sent me into a pit of depression, but in general, I think I tend to manage my symptoms, probably not as well as I should, as I think do have a tendency now, to bury my head in the sand to some degree.   

But my philosophy is – there are far worse things happening to far better people than me. I have been lucky- it could be so much worse.

I am so, so, fortunate to have a wonderful support network of family and friends (despite the fact that I pretty much never mention my illness and just hope that they understand when I have to pull out of events etc).

So, it’s ever onwards to the next adventure – who knows what’s around the next corner – for me, it’s a diving trip to Egypt in four weeks – I will not give up.  

Love to you, especially Nicola who is a constant source of inspiration. I can’t wait to read your stories too. 
June 2017. 


2018 UPDATE: 



Current SYMPTOMS: 

I'm actually really pretty well! Having suffered badly in the past with digital ulcers, I've not actually had one for over twelve months now.  





I do have strange growths on my finger tips which I assume is related but have not been affected sufficiently enough to worry. 

The telangiectasia on my face and neck iare still there, possibly increasing slightly but it doesn't affect me too much.



I do still become very tired, if only my body was as active as my mind, my house would be so tidy and organised but the two are just not in sync so I have to be satisfied with what I can do.

I don't walk far as my legs, hips and back get very achy.

On waking, my body is extremely stiff, especially my arms and shoulders, but this tends to ease, over about an hour.


Current MEDICATION:

As I am also diagnosed with Cardio Myopathy, there are the usual problems with what medications help one problem, exacerbate the other.

So, currently, I'm taking Adlat Retard, Spironolactone, Fuerosimide, Atorvastatin, Omeprazole.

In addition, I take iron and multivitamin tablets.

I've had some strange problems over the year, and I must admit I do tend to blame Scleroderma for everything!

Having been extensively tested for allergies following severe sudden rashes, I now know I'm allergic to a number of additives in products like washing powder, shampoo, face creams and cosmetics.

Eliminating all these projects from my life as far as humanly possible has cured the problem. Big tick, against this one.

So, my current situation, is actually very, very good and I do consider myself so fortunate compared to many of my fellow scleroderma patients.

I don't know that I'm doing anything different from this time last year but I'm definitely in a much better place medically.


RESEARCH 2018:

I have not taken part in any research trials.

I would ABSOLUTELY be willing to participate in trials, but have never got past the initial screening, possibly due to the heart failure complications?

I am willing to try all, and any possible, medical interventions but no one wants me, lol!


IN BETWEEN MEDICAL APPOINTMENTS:

What do I do to keep myself busy?

Well, I work part time, mornings, in a job I love.

And as Nicola knows, I love spending time with friends and family on holiday, the warm weather is so good for me. Although, I do struggle with my heart failure if it's too hot.

I love snorkelling in the Red Sea. I have given up diving now, but I still love it, in amongst the corals and dolphins.  

 

I am very involved in my local village activities, we have a great community here, so I consider myself very fortunate indeed.

I love crafting, one of my very many and varied skills is making tiaras.



I guess my closing statement would be that, for no apparent reason, both my scleroderma and my heart failure are now very much in the background.

I lead an almost normal life, so, sudden and dramatic improvement, really is possible.

Thank goodness for absolute angels like Nicola, she's been my go to every time for information, I'm sure you all are familiar with the phrase 'scleroderma? What's that?' And this is from medical professionals.

I wish you all much love.
Jan  

       
Huge thanks go to Jan for sharing her scleroderma reality and experience for Scleroderma Awareness Month. 

 
 
 
 
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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