October Is Raynaud’s Awareness Month

October Is Raynaud’s Awareness Month
0
(0)

Living the Dream Scleroderma Style

Sunday, Oct. 1, was the start of #RaynaudsAwarenessMonth 2017.

As scleroderma patients, we know all too well how debilitating and painful the symptoms of Raynaud’s can be. In addition, the symptom control of the added extras, caused by a lack of blood supply in the scleroderma patient, include digital ulcers and calcinosis, to name just two.

Every patient who kindly took part in my global patient profiles and research campaign for Scleroderma Awareness Month 2017, reported Raynaud’s to be a problem and difficult to manage.

Awareness about Raynaud’s

Nearly every scleroderma patient will have Raynaud’s symptoms, and some patients report Raynaud’s as the initial symptoms leading to their scleroderma diagnosis.

Raynaud’s is the narrowing and constriction of the blood vessels to the extremities, hands and feet, as well as other body parts.

Primary Raynaud’s – Jane Ogilvie

 

Raynaud's
Raynaud’s

 

Raynaud’s can be present on its own, known as primary, or it can be secondary to another diagnosis, for example, scleroderma.

Raynaud’s is secondary in other autoimmune patients, for example, in lupus, as well as in patients who have worked in an industrial environment (for example, vibration white finger), and in a patient whose body has been subjected to intense hypothermic conditions (military operations personnel, for example).

My Raynaud’s reality

My Raynaud’s sensitivity is so severe that an attack can be induced by just moving from one room to another, indoors!

My symptoms are easier to manage by avoiding any temperature change.

Should I have to go out, I must wear appropriate clothing. My inner “Bond Girl” absconded years ago, so now I’m forced to wear Ugg boots and full clothes even in the summer.

boots
Hottest day of 2013: I have to  wear Ugg boots and gloves to try to prevent a Raynaud’s attack.
wrapped up
Wrapped up on a sunny autumn day, 2016
2016
Wrapped up on a sunny autumn day, 2016

 

On Sept. 27, I had the pleasure of attending my monitoring appointment with my hero, world expert Chris Denton, PhD, of the Scleroderma Unit, the Royal Free Hospital, London.

Moving my “tin man body” for this 12-hour BIG day out takes weeks of preparation as well as recovery. I still remain in the fragile zone.

But it is always an honor and an extremely humbling experience to attend the Scleroderma Unit, and meet with other patients. (A huge thank you to Deani Baillie.) As well as continue to impress Denton with my symptom reversal after 20 years of first having heard those life-changing words: “You have scleroderma and Raynaud’s.”

Denton
With Professor Chris Denton on Sept. 27

I was delighted that my trip coincided with a lovely, warm 20-degree Celsius (68 F) autumn day in London. This enabled me to have my photo taken for a second, with me wearing just my T shirt, without me losing blood circulation to my hands or feet. I had two fleece jackets and a raincoat with me, and I was wearing my winter “biker Ugg boots,” with thick Thinsulate socks, and gloves, of course.

Royal Free
Sept. 27 at Royal Free

 

2016
Nov. 30, 2016, at the Royal Free

For my best Raynaud’s symptom management, I have found that prevention is better than cure. Indeed, there is no cure. The only medication I take is bosentan,125 mg twice a day, which has reduced my digital ulcer frequency.

I also visited Dr. Kevin Howell, who celebrates his 25th anniversary working for the NHS this year. Howell is a world expert on Raynaud’s. Every patient who visits the Raynaud’s Unit will be familiar with his horrendous bucket of ice cold water upon their initial visit.

Howell
With Dr. Kevin Howell

It is 19 years since I originally plunged my hands into his bucket and I still cringe at the excruciating pain this caused, triggering a Raynaud’s attack in my hands.

Thermal imaging camera equipment.

The image below shows the heat transmitted by a normal, non-Raynaud’s individual, following the ice-bucket hand challenge, compared to that of a Raynaud’s patient, seen in the middle and right-hand images within the frame.

 

A specific camera, a capillaroscopy machine, is then used to assess any permanent damage to the capillaries and blood vessels.

We desperately need a cure for Raynaud’s.

#RaynaudsFreeWorld

To ADD the Raynauds Awareness Month Twibbon:

Living the dream, Raynaud’s and scleroderma style.

 

Follow Raynauds Unit Royal Free Hospital Facebook Page for latest updates, and,

raynaudsscleroderma.blogspot.co.uk

Please DONATE to help fund medical research at The Raynaud’s Unit where 100 percent of all of your money will be used for medical research purposes only. Thank you.

#SclerodermaFreeWorld #RaynaudsFreeWorld

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

 

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
×
Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

How useful was this post?

Click on a star to rate it!

Average rating 0 / 5. Vote count: 0

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

2 comments

  1. Kara says:

    Since I started taking Diltiazem a couple of years ago, I have not had any major Raynaud’s attacks in my hands or feet. It has been such a blessing for me! I was wondering if this has worked for anyone else? I still have other concerning symptoms that make me concerned about Scleroderma, but I have not followed up with my Rheumatologist in long time. I do hope a cure is found for both diseases soon!

    • Hi there – thanks for your comment! I have no experience with Diltiazem, but I am overjoyed it is working for you! Stay warm and well 🙂 Best wishes, Nicola #RaynaudsFreeWorld #SclerodermaFreeWorld

Leave a Comment

Your email address will not be published. Required fields are marked *