Sunday, 16 April 2017

The Magic of Summer When Living With Scleroderma, Raynaud's, Autoimmune Rare Disease - Nicola Whitehill

The Magic of Summer - Nicola Whitehill 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  


 


‘Now that the weather is better, you must be better’

This is a phrase which, if I had a pound or a dollar for every time a person told me this, my fundraising efforts for Prof Chris Denton’s research at the Scleroderma Unit  at The Royal Free Hospital would now have more than reached its target of a million, and the cause and cure of scleroderma would have been discovered! 


Thanks to the very creative Sharon Esposito for this image


If you are living in the northern hemisphere, you will currently, be experiencing the middle of summer, and, conversely, if you are living in the southern hemisphere, you will currently be going through the middle of winter.

Living here in the UK, I have always looked forward to midsummer’s day, June 21st, the longest day for hours of daylight in the northern hemisphere.   

Sadly, an increase in daily daylight hours combined with an increase in daily temperature, is not sufficient to ‘cure’ the daily symptoms experienced by a scleroderma and Raynaud’s patient. Well, not this patient, anyway.

However, the mid summer’s combination is a more welcome combination compared to that which will be experienced in six months’ time, with short dark days along with cold temperatures.  
 

The magic of summer brings along a whole different set of symptoms for me, including over-heating, and swelling. 

For the first seven years of my diffuse scleroderma diagnosis, I took all of the chemotherapies and immunosuppressants available. 

This may make me sound similar to a ‘junkie’, but at this time, I was desperate for my body to respond positively to these disease modifying drugs, to prevent the final option which I was facing, and was actually on the waiting list for – a stem cell transplant.

Luckily for me, my body responded to the five year 2g daily dose of mycophenolate, which I stopped in March 2004 upon completing all of my study and training to become a qualified barrister.

Although I am overjoyed to now be immunosuppressant and chemotherapy free for 12 years, the sun, now brings along an added complication for me, by increasing my risk to developing skin cancer. 

I already have a small patch of skin on my left knee which has been diagnosed as ‘Bowen’s’ disease, and which was responsive to topical treatment, but has subsequently reappeared.  



NHS England provides the following helpful description of Bowen’s disease, 


Bowen's disease is a very early form of skin cancer that's easily treatable. The main sign is a red, scaly patch on the skin. 

It affects the squamous cells  in the outermost layer of skin – and is sometimes referred to as "squamous cell carcinoma in situ". 

The patch is usually very slow-growing, but if left untreated there's a small chance it could turn into a more serious type of skin cancer. 

To read more on this, Click here


I have also noticed that the red dot to dot puzzle on my face, medically known as telangiectasia, loves the sun, and will be bolder and brighter after a few minutes of sun exposure. 

I focussed on telangiectasia on DAY 27  Scleroderma Awareness Month 2016 Campaign. 
 

Day 27 June Scleroderma Awareness Month 2016 - Telangiectasia

The lump on my forehead which still remains questionable as to whether it is calcinosis or the makings of a basal cell carcinoma (BCC) also loves the sun by becoming bigger and redder upon sun exposure. 


I focussed on calcinosis on DAY 19  Scleroderma Awareness Month 2016


 
BCCs are thought to be the most frequently occurring form of skin cancer in the US, with or without the added complication of scleroderma.
BCCs are abnormal, uncontrolled growths or lesions that arise in the skin’s basal cells, which line the deepest layer of the epidermis (the outermost layer of the skin). BCCs often look like open sores, red patches, pink growths, shiny bumps, or scars and are usually caused by a combination of cumulative and intense, occasional sun exposure. 

For more information on this, Click here  


In an attempt to minimise any further medical skin nightmares, I avoid going out in sunlight for the majority of the day, on a sunny day. 

I also make sure that my body is well covered by clothing, including my arms, which have developed ‘sun spots’ over the years, and I certainly do not want these becoming bigger due to further sun exposure.

I wear a baseball cap to protect my face, along with big sunglasses and face cream with a high SPF (sun protection factor). 

I am not proud to be able to liken myself to a character from The Simpsons, (the guy with the long hair, baseball cap and glasses), with my ‘I have to avoid the sun’ look, and with my inner ‘Bond Girl’ having absconded in embarrassment.

This has required me to make lifestyle choices which I would not have ordinarily made prior to diagnosis, as I used to love sitting out in the sun. In 2003, I lived in Fuerteventura in the Canary Islands for 5months, to see if the sun helped my symptoms.

My body has never been as pale in colour as it is now, after a few years of avoiding the sun in an attempt to minimise any further skin complications.

On the plus side, the warmer temperature certainly makes my skin ‘softer’ and not as rigid / tight. I still continue with my daily skin care routine by way of bathing in liquid paraffin and moisturising with a thick emollient. 

This routine having been in place for over a decade and contributing to my current 95% skin reversal to healthy normal skin. 


To read more about my daily skincare routine, Day 10  


Over the more so recent years, overheating, (yes, you have read that correctly – overheating), has become a huge physical challenge for me, in the summer months. 

My internal thermometer goes into overdrive, with a very small window of prior warning.

Should I become too hot, this will result in excessive sweating all over my body, which can cause a rash on my trunk. 

The medical scleroderma genius Prof Chris Denton tells me, that this is due to an alteration in the skin make up further to scleroderma symptoms, with an alteration to the sweat glands. 

I very much hope to raise sufficient funds to sponsor a research student for investigating this further, along with the painful enigma which is calcinosis.

If I have been too hot throughout the day, later on, in bed at night time, I can experience intense raynaud’s attacks whilst my body is trying to regulate itself. 

This comprises of intense shivering and muscle spasm with my body turning rigid, and takes a while to regulate. 

Clearly, this is a most unpleasant experience and extremely frightening, and so prevention of such is key and recommended.

I also find that my body becomes more swollen in the warmer months of the year, and in particular my joints, namely knees, ankles, elbows and hands. 

This makes for wearing ‘feminine skimpy girly’ summer clothing a ‘no go’, when combined with the skin cancer risk element.

Unfortunately, I am not able to ditch the Uggs and gloves over the summer months. My raynuad’s involvement is so sensitive that the smallest of breezes could be a trigger, regardless of the temperature. 

Living in Fuerteventura certainly eased my chronic pain and flexibility. However, everywhere was air conditioned, which although my internal sweating production appreciated this, my fingers and toes would be blue.

My awareness story in The Daily Mail in 2013 features photos of me wearing my Uggs and gloves on the hottest day of 2013.  

 
Hottest day of 2013, wearing Ugg boots and gloves to prevent Raynaud's attack

2016 Daily Mail update 

One of my highlights to the change in Solstice, (if not the ‘only’ highlight) is that I get together via Facebook with my lovely friend and fellow Scleroderma Raynaud's patient Silvana Vidmar, who lives in Australia. We make it our priority to exchange solstice greetings and tips on how to get through the winter hibernation period for each other. 

So although, the days are longer and lighter, the plight of the scleroderma patient still continues with a smorgasbord of summer symptoms to negotiate and manage.
Oh and did I mention sleep?? sleep in the summer, after a winter of hibernation, is a luxury.  
Oh, for the magic of summer….. 


Hottest day of 2013 wearing Ugg boots and Gloves to prevent Raynaud's attack



Sadly, since this article was published, Silvana passed away in July 2017. 


Myself, her family and friends remain broken hearted, however, know, that she is now, scleroderma-free. 

RIP Silvana, and Thank You for the beautiful memories and laughter we shared. 

My work / hobby will continue to be inspired by you. 

#SclerodermaFreeWorld #RaynaudsFreeWorld 
  



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


The Magic of Summer - Nicola Whitehill 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  









No comments:

Post a comment