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 





‘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 will continued to be inspired by you. #SclerodermaFreeWorld #RaynaudsFreeWorld   




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

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  

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


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

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    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

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

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   

2017 Rare Disease Day Flashback  
  




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. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



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: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

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: April 2018





 


No comments:

Post a Comment