Wednesday, 10 May 2017

MOBILITY: Scleroderma, Raynaud's, Autoimmune Rare Disease, Nicola Whitehill

Mobility 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#RaynaudsFreeWorld #SclerodermaFreeWorld 




In Sept 1997, I was diagnosed with diffuse Systemic Sclerosis (scleroderma) and told by my medical consultant at that time, that, I would have to use a wheelchair by Christmas. 9 months later I changed my medical consultant to the super human-beings who are Prof Dame Black and Prof Denton.

To read my article 'Initial Diagnosis', Click here   

Fast forward to April 2016, and I have reluctantly bought an electric scooter to help me walk my dogs. 

Although, as you can see from photo, my white dog, Mitzy, prefers to be in the driving seat!  

Living the dream with the dream team at Birkdale Golf Course, UK

 
The decision to buy the scooter was preceded by years of me pushing myself through the day, to perform what I needed to, for that day, to then come home and collapse on my sofa / bed, counting the hours until I had to be mobile again.  

The pain would force me to be unable to do anything else for the rest of the day, other than be horizontal in my bed with tears rolling down my face.  

Although, I have minimal internal organ involvement, thankfully, and my heart goes out to my fellow patients who have internal organ involvement, my musculoskeletal system has taken a huge hit.

I can not remember the last day that I did not have any pain all over my body, with only the hardcore opiates being effective for some momentary relief, and of course the mind dense fog which accompanies them, makes them an emergency option, only, for me.

This has led to making my day to day reality that I live through the pain by staying at home and avoiding physical exertion unless wholly necessary eg. medical appointments, weekly BIG shop….

A walk in the park for me, as for most other patients, I am sure, is a huge effort- similar to a mountaineering expedition! I give a whole new description to the phrase ‘a walk in the park’ since Ssc appeared in my body!

The preparation for which, does not take a casual 10minutes to get ready and out of the door, as seen in pre-diagnosis days, but hours of preparation by attending to my other symptoms (bathing routine, diet, steadying internal temperature etc), before the mammoth task of getting dressed! 

This brings along added extra challenges- to make sure that the correct clothing and layers are worn, which can be easily removed in the event of a no pre-warning ‘burn up’.

And of course, items of clothing are another challenge! 

The material is very important to avoid any skin irritations, as well as clothing must be loose- underwear is most uncomfortable!

My preferred daily outfits, (measured by ease of symptoms), are my fleece pyjamas, dressing gown and Ugg boots with Heatsaver socks to keep my feet warm. 

I wear gloves for most tasks and use a microwaveable heat warmer to keep my hands warm.

There is certainly no danger of me being caught for speeding with my new wheels. I am only able to manage the slowest pace, which is represented by a tortoise on the speed dial. 

As, the bouncing around vibration against my back makes the slow pace the least painful option – much to Mitzy’s delight as she struggles to keep up on the fast speed, which is represented by a hare on the speed dial!

Although, I feel disappointed that I am not currently able to tear around the park with my dogs like a hare, I am so happy that I have finally stopped dragging myself around, and can return home without collapsing in total agony!

As well as, it is a great feeling for me, seeing my little dream team companions out and about in nature, loving life! I need to be more dog haha  

April 2016.   



2017 Update

Well it is now over 12months that I have been using my electric scooter to scoot around paradise (the block) with the dream team (my dogs). I really wish that I had given into my stubborn pride years ago, and saved myself days of extra agony from having forced my ‘tin man’ body to perform.

To read my article ‘Living the dream as the real life tin man’, Click here 

Although my symptoms still demand a disciplined daily routine, by not forcing and dragging my body to exercise if I really do not feel up to it, and thereby causing extra pain, I have been able to find a few more hours in my day where I can feel more productive, instead of being immobilized in excruciating, brain hijacking pain.

I wrote about:

The full time job of managing the symptoms, Click here 

‘Ah great, another day to spend in bed’ said no Raynaud’s Scleroderma Patient, Click here 

My Job today is to simply get better, Click here 

Sadly, I still have some work to do, to improve my stamina before I can return to the gym. 

However, a return to the gym remains my goal. 

I have resigned myself to being a ‘home bird’ for most of 2017, giving my body a rest from extra physical exertions of travelling to attend meetings, usually in London, by way of my expert patient roles.

The personal frustration which arises from my scleroderma, as well as my Raynaud’s symptoms, still remains a challenge, when being forced into continual hibernation and lockdown in an attempt to minimize symptom severity. 

I have shared some of my coping mechanisms on my alter ego personal blog:  www.cosmicfairy444.blogspot.co.uk

I am eternally grateful for access to the internet as this is my lifeline to the world.

I was delighted to have been quoted by abilitynet.org.uk on 2016 International Day of Persons with Disabilities #idpd : 

‘the internet is a lifeline for me. I’m under house arrest with Raynaud’s, 
but I still run a global community in my pyjamas’. 

Read more, here 
 
All in all, I am grateful for the internet for enabling me to share my personal experience of living with this life changing and potential life threatening disease, in the hope to help other patients and to be a source of education and reference. 

A much needed financial investment in research commitment from global centers, will most certainly improve the scientific understanding to cause and cure, with a #SclerodermaFreeWorld #RaynaudsFreeWorld becoming a reality.  




An edited version of this article was published here, in my Column with Scleroderma News April 2016.   






  

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 del Galdo
                                 ‘Learning from our patients’

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: 

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


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

 
  
Last Update: Feb 2020.   


Mobility 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#RaynaudsFreeWorld #SclerodermaFreeWorld 







2 comments:

  1. You are so impressive.
    I hate this condition and how it traps bright vivacious vital people in pain
    I hope for huge strides this year in research and for you to heal and get back to the gym this year.

    ReplyDelete
    Replies
    1. HI there Posy, THANK YOU so much for your kind comments. Did you see that the theme for this years Rare Disease Day is Research? #SclerodermaFreeWorld
      http://raynaudsscleroderma.blogspot.co.uk/2018/01/2018-key-event-dates-for-rare.html

      Delete