Tuesday, 25 April 2017

The Raynaud's and Scleroderma Patient’s Nemesis Season of Winter - Nicola Whitehill

Here in the northern hemisphere we are in the midst of winter. For me, in an attempt to minimise my Raynuads symptoms, hibernation began in October. This entails being under house arrest, unless I really do need to go out. Such ‘special days’ out are reserved for medical appointments and juicing ingredient re-stocks (living the dream, scleroderma style).
I wrote about the full time job of managing my Scleroderma symptoms here

As well as, I detailed my ‘Scleroderma diet’ here

I have learnt from experience, over the course of the last two decades, that my Raynaud’s symptoms are best managed by maintaining a constant temperature around me, as much as possible. In addition, to wearing multiple layers of thermal garments and heatwarmer accessories, making for the desertion of my inner Bond Girl persona, years ago.

September 2017 marks my 20th year anniversary since diagnosis, whereby I was given a fifteen month prognosis by my diagnosing doctor, who led my care for the first twelve months of diagnosis, before I changed to Prof Denton and the Scleroderma Unit at The Royal Free Hospital, and to whom I eternally grateful, having now reversed my skin involvement back to healthy skin. Read more here

I have tried all of the medications currently licensed and prescribed for Raynaud’s, with little clinical affect, other than intense headaches, dizziness and nose bleeds. I have been taking Bosentan 125mg twice a day, continuously, for the last four years, and have seen a marked, and most welcome, improvement with the reduction in digital ulcers I now experience. I am extremely grateful that my ulcers did not develop into gangrene or tissue death resulting in amputation, which I know for some patients, this is their Raynaud’s reality.

Unfortunately, my Raynaud’s remains extremely sensitive, even with taking Bosentan. I can experience an attack which compromises of colour changes (blue, white, black, red) to my hands and feet, accompanied by intense muscle spasms throughout my entire body. This is a most unpleasant, horrendous and painful experience, making for this social butterfly being transformed into a confined eskimo Michelin Man, in an attempt to reduce the attacks. The level of tiredness which follows an attack is beyond exhausting. Read more here

Raynaud’s can present on its own as well as secondary to another diagnosis, such as Scleroderma, where it is known as ‘secondary Raynaud’s’. There is currently no cure to this extremely debilitating and painful condition, requiring much needed financial investment into medical research to improve the understanding of what causes the blood vessels to spasm, as well as, what biological processes need to be activated to prevent it. 

Further to the success of the Show Your Colours (SYC) for Raynaud’s event in October, Raynaud’s Awareness Month, read more here, myself and the SYC Raynaud’s team have set up a  JustGiving page for the Raynaud’s Unit at The Royal Free Hospital, where 100% of the fundraising monies and donations will go towards medical research led by Dr Kevin Howell and Prof Denton, who are world leaders and authorities in Raynaud’s. 

I detailed further, the medications and management of Raynaud’s in the UK here
as well as, I detailed my temperature sensitivity here

This is going to be a very busy year for raising awareness. Increased commitment for medical research investment will provide the eureka moment needed for unlocking the Raynaud’s and Scleroderma code.

With the Scleroderma and Raynaud’s patient in the meantime, living in the hope that, that moment will happen in their lifetime. 

Let’s make this happen…. #SclerodermaFreeWorld #RaynaudsFreeWorld

Here is a visual for awareness events which you may be interested in…. Rare Disease Day is February 28th, with ‘Medical Research’ as the theme. Follow the Facebook page for regular updates.

This is my first article for 2017, and so, I would like to take this opportunity to wish you a very Happy year ahead, feeling good….. Living the dream, Scleroderma style.

An edited version of this article was published by Scleroderma News in Jan 2017 here

To read my articles:

  • the importance of an early diagnosis click here 

  • the role of medical research click here

  • the importance of expert specialist centres click here

  • diet and nutrition click here

  • taking part in research trials click here

  • the UK guidelines for management and treatment of Scleroderma click here

  •  my skin is cured from scleroderma click here

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.

Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld
Please use the icons below to share this article #SclerodermaAwareness 
April 2017

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