DAY 13 Scleroderma Awareness Month: Factor XIII

DAY 13 Scleroderma Awareness Month: Factor XIII

 

Day 13 Scleroderma Awareness month

DAY 13  Scleroderma Awareness Month: Factor XII

The Rheumatology clinical trials unit at The Royal Free Hospital in London are conducting a clinical trial to see if purified Factor XIII will be an effective treatment for scleroderma patients.

Factor XIII is a component of the blood clotting cascade. Often, patients with scleroderma have an altered clotting ability upon wound injury, which could be a contributory factor in the production of calcinosis, as well as stiff, fibrotic vessels blocking the process.

If you are local to the Royal Free hospital, please consider taking part in this trial.

For more information on the Clinical Trials unit and other ongoing trials, please click

http://www.scleroderma-royalfree.org.uk/Our_Clinical_Trials.html#OnLoadVariable=&CSUM=1

https://www.royalfree.nhs.uk/services/services-a-z/scleroderma/clinical-trials/

https://www.royalfree.nhs.uk/services/services-a-z/scleroderma/research/

Over the decades, I have taken part in various clinical trials, and although, some patients are not so keen to take part, I am an advocate for patients to take part in what could be discovered to be the cure! The trials are monitored vigorously, having been subjected to a robust criteria for design and application beforehand.

Evidence based medicine is essential for best practice. This is timely and can be hindered by slow patient recruitment due to scleroderma being a rare disease. Specialist expert centres are crucial for not only best practice patient care, but also, best practice global medical research. By joining together and uniting around the world, these centres can best serve the scleroderma patient in terms of improving and accelerating the research progress, combined with the Orphan drug process. This could reduce the time taken for a drug to reach the marketplace, but is still timely in terms of years…. with time being a luxury to the scleroderma patient.

I am extremely grateful to those scleroderma patients who took part in clinical trials to make the use of the biologic therapies, become a helpful treatment choice for scleroderma.

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. The opinions expressed in this blog article are not those of Scleroderma News and are only intended to spark discussion about issues pertaining to the disease.

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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