DAY 7 Scleroderma Awareness Month – RAYNAUD’S

DAY 7 Scleroderma Awareness Month – RAYNAUD’S

Day 7 Scleroderma Awareness month

DAY 7  Scleroderma Awareness Month

Raynaud’s can be an initial symptom in the autoimmune patient (MS, Lupus, Fibromyalgia) and, which of course, includes scleroderma.

It is important to emphasize that Raynaud’s can also present on its own, without any autoimmune involvement.

The current understanding is that if a patient has scleroderma, they will more than likely have Raynaud’s also.

However, Raynaud’s symptoms are not a direct evidential link to autoimmune disease and the relevant medical tests must be carried out to determine this.

Raynaud’s can affect many areas of the body, as the image shows.

Attacks can last for seconds / minutes / hours. The color change to the affected body part indicates lack of blood to those areas, which, upon its return, feels similar to red hot, fine needles being stabbed in the area.

This makes for the perfect ulcer forming environment, and should an ulcer(s) be present, Raynaud’s will make them even worse and impair healing.

There is currently no cure, with treatments designed to suppress the symptoms, usually accompanied by unwanted side effects of blood pressure altering drugs.

Fluoxetine is known to be used ‘off license’ to treat Raynaud’s symptoms. As indeed, so is Sildenafil, and is also used as an option. Personally, I did not tolerate either of these drugs, and after 3 bouts of Iloprost, I made a solemn promise to myself that I would never take it again, due to the intense side effects, including my head feeling as though my skull was going to explode, and oversensitivity to light.

I accept that these treatments do work for some patients, but not for me!

I have found that prevention is better than cure when trying to manage my Raynaud’s symptoms. I wear lots of layers as well as, gloves and Ugg boots all year round.

I take Bosentan 125mg twice a day, which helps with my symptom control, and it has reduced the number of digital ulcers to my hands and toes, which has been most welcome!

My hands are the best that they have been since diagnosis, I am delighted to say…… I have gloves for every occasion and look like an eskimo all of the time!!

I have tealed my nails especially for June Scleroderma Awareness Month, living the dream, hoping for a cure!

PIC BY BENJAMIN FURST/MERCURY PRESS (PICTURED: NICOLA WHITEHILL'S HANDS WHICH ARE NOW DEFORMED) A lonely ‘real life Tin Man’ has missed out on ever finding love or having children because she is trapped at home by a rare condition. Nicola Whitehill, 43, had to give up any hope of having a relationship or family aged 24 when she was diagnosed with scleroderma, a rare and incurable condition which causes her skin and blood vessels to harden, and given just 15 months to live. Now the former barrister must spend three hours every day soaking herself in oil lathering on moisturiser before she is able to move her joints at all. SEE MERCURY COPY

Note: Scleroderma 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.

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.
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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.

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