If Only We Had More Investment in Medical Research

If Only We Had More Investment in Medical Research

Living the Dream Scleroderma Style

 

Today, Feb. 14, is Valentine’s Day. Scleroderma can affect the heart in various ways. Fibrosis of the heart can be life-threatening, and may contribute to pulmonary arterial hypertension.

Upon initial examination and diagnosis, the heart should be assessed for any disease activity.

Electrocardiogram and echocardiogram tests are the investigative tests carried out. I discussed the involvement of the heart, on day 16 of my Scleroderma Awareness Month 2016 Campaign.

I am extremely blessed that I have very little damage to my heart caused by scleroderma. My heart is monitored annually at my local hospital in Southport, in the U.K.

(Courtesy of Nicola Whitehill)

In 2013, I came out of the “scleroderma closet” for awareness purposes: “Living the dream – being your own rare disease advocate.”

The hottest day of 2013: I have to wear Ugg boots and gloves to prevent a Raynaud’s attack. (Courtesy of Nicola Whitehill)

I have raised a few headlines with my “tin man” persona. Although it is my musculoskeletal tin man symptoms, as opposed to my heart, impeding me from feeling better.

While the tin man in the film “The Wizard of Oz” sings, “If I only had a heart,” my song is, “If only we had more investment in medical research.”

The Pandora’s box that is the full-time job of my symptom management has not failed to bring further unwanted symptoms, so far in 2018.

On day 18 of Scleroderma Awareness Month 2016, I discussed how scleroderma can affect the mouth. I recently attended my dental checkup. Sadly, the acute periodontitis I’ve had for years is on the verge of being infected. Which, of course, is made worse by the time of year here in the United Kingdom — winter, my nemesis season.

Due to the physical difficulty that I have with holding a toothbrush, I attend dental hygienist appointments with Ms. Louise Doran every three months, combined with appointments with my dentist, Dr. Andrew Booth, every six months. I feel very blessed for the dental care team I have. I am extremely grateful for their patience and expertise in helping me manage my dental issues brought about by scleroderma.

I certainly believe that the dental aspect to scleroderma is very much an unmet clinical need, where the lyrics to my new song-mantra, “If only we had more investment in medical research,” most definitely apply.

On a brighter note, I am extremely delighted to have been invited to be a patient research ambassador for the Royal Free Hospital. I very much hope to highlight the many different aspects of living with a rare disease, including where investment in research funding is limited and urgently needed.

Tomorrow sees the start of the 5th World Systemic Sclerosis Congress. I am broken-hearted to not be physically able to attend again. The event is a global hub for sharing the most up-to-date scientific understanding of the scleroderma enigma, as well as exploring current research topics of interest. Click here to read 2016 research abstracts.

The countdown is on for Rare Disease Day on Feb. 28. This year’s theme is “research.”

Click here for a 2017 Rare Disease Day flashback. Rare Disease Day 2017 was themed “Medical Research and its importance.”

For my Scleroderma Awareness Month 2017 Campaign, I focused on patients across the globe, plus medical research developments.

ALL patients surveyed confirmed the importance of:

  • Early diagnosis
  • Expert specialist centers
  • Access to innovative medicines.

Further unmet clinical needs highlighted the urgent need for investment in medical research, including dental issues. Click here to read about my personal unmet clinical needs.

I am hoping that I do not have any further dental blips between scheduled appointments. I am back under house arrest, in Eskimo hibernation, content with being a sofa surfer during the Winter Olympics.

Future key events for this year include the Family Day at The Scleroderma Unit on May 19 — this Scleroderma Olympian is already in training for it!

Wishing everybody a very happy Valentine’s Day, feeling good.

I will be living the dream, scleroderma style, singing along to my new mantra, “If only we had more investment in medical research.”

Please DONATE where 100 percent of your donation will be used for medical research purposes.

#SclerodermaFreeWorld #RaynaudsFreeWorld

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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.
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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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