Friday, 22 June 2018

Sharon Harris, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Sharon Harris, UK.
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Sharon Harris, UK


Name:           Sharon Harris  

Location:       Chorley, England, UK  


Diagnosis:   
   
Scleroderma, Raynaud’s, Arthralgia, Calcinosis, Telangiectasia, Epilepsy  


Year of diagnosis:    Raynaud’s, 2012 

Scleroderma, August 2016


Where / who diagnosed you?  

Dr Samaranyake, Consultant Rheumatologist, Preston


What were your presenting symptoms?  

I had ulcers on my little finger, so my GP gave me chilblain cream.

I returned some weeks later, still with the ulcers as well as joint stiffness and tiredness all of the time.

I knew something was not right. The GP then referred to me the specialist, Dr Sam.   

Dr Sam told me that I had systemic scleroderma and how did I feel about this. I did not really know what it was, and cracked and broke down.

I rang my mum and told her that this was serious.  

I was devastated for a good 2 weeks. I cried every day and still do, as I feel I have a very bleak future ahead of me.  


2017 reality:   

Since being diagnosed, it has affected me emotionally, psychologically, and made me short tempered. I am also experiencing the menopause, so I am constantly hot and cold.  

I will not let it beat me or stop me going out to do things, but I have to spend days in bed after doing anything.  

My mum bought me a dinner service for Christmas, which I have dropped half of, already! 

I can not take antidepressants due to my epilepsy medication.  

I have lost 4 stones in weight since last August, as I am unable to eat most things and bring food back up. This is gradually improving with diet changes.  

My side hurts all of the time with scleroderma pain, as well as my chest bone and my bones. 

I moisturise my skin daily, but have tight skin on my legs and arms.  

My legs and arms feel heavy, as though I am walking with a person on me all of the time. 

I wish I could do more, but I have hardly any energy. It takes me much longer to do things eg. Cleaning and simple tasks. 

I have ulcers and calcinosis which are extremely painful.





2017 SYMPTOMS:  

I am currently taking medication for epilepsy, nothing for the scleroderma. I am due to see the scleroderma specialist again in August.  

I take Losartan for my Raynaud’s. I have been offered Iloprost but am hesitant due to the side effects.  

I take thyroxine for my underactive thyroid and digoxin for my heart.  


What are your 3 biggest current challenges due to your diagnosis?  
 
My hands are so swollen that I can not grip anything or make a fist. My finger tips are very sensitive and painful with ulcers and calcinosis.
 




I also have carpel tunnel syndrome which the Occupational Therapist has given me straps for.  

My right foot is swollen, so I have to wear flat boots and fluffy socks. I am no longer able to ‘dress up’ anymore.  

I feel restricted and have to wear gloves all of the time. I can not write or sign my signature anymore.

I use a sponge adaptation on pens, to help me hold the pen, as I can not grip it. 

I have adaptations in the kitchen for tins and bottles.  

I have a raised toilet seat, as well as hand rails and a walking stick to help me move about. 

I find everything tiring and an effort to do anything, so I will put most things off. 

I am limited to a weekly shop with my mum. If I make the effort for special occasions, I will suffer for days afterwards.    

I feel as though I am moaning all of the time and so I stay away from socialising as I do not want to get into conversations, as I am in too much pain.  

The constant neuro-muscular pain makes it difficult for me to sleep, adding to my continual tiredness.  

I also worry about the impact that this disease is having on my mum and son, as I do not want to cause upset to my family.  


What are your 3 top tips for living with your diagnosis?  

Make the necessary adaptations.   

Go one day at a time.  

Rest, if you have to.  


What are your 3 wishes for the future? 

A cure will be found SOON.

I wish all fellow patients well. I have found great support in the social media groups and have been encouraged by other patients’ stories.

I have a sparkling future ahead, with my lovely little dog, Mackey, and my family. 
June 2017.  



2018 UPDATE:


Current SYMPTOMS: 

My symptoms are still the same, but have settled a little.

I have stopped taking a few of the medications, and now take Sildenafil for my circulation. The initial side effects of sweats, headaches and nausea have settled.

I am not sleeping as well as I used to and have frequent insomnia.

I recently had a cardiovascular operation which has been successful.


RESEARCH 2018:

I not taken part in any research trials- I have not been asked to.


IN BETWEEN MEDICAL APPOINTMENTS:

I have been forced to change my lifestyle due to my symptoms. I do not go out as often as I used to, but I am trying to go out a little more.

I have recently started to go to the gym, to help build up muscle around my knees and hips. I use power lifts weights to try and improve my stamina.

I enjoy spending time with my family, friends and Mackey.




  

Huge thanks go to Sharon for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month.

Sharon’s initial symptoms sound very similar to my initial experience.   

To view the NHS England, Digital Ulcer Management Guidelines, Click here

 
 
 
 
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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