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   



  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', Click here 

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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    


  

World Scleroderma Day 2018, 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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       











No comments:

Post a comment