Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
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My Raynaud’s symptoms
keep me under 'house arrest' all year round.
There is currently no cure for
Raynaud’s, with prescription medicines having blood pressure altering,
unpleasant, side effects.
I no longer experience as many digital ulcers and the
intense, excruciating pain which comes with them, since taking Bosentan 125mg
twice a day.
However, should I put
too much pressure / wear and tear on the soft tissue of my digits, I will start
an ulcer or calcinosis. I currently have a pesky one which appeared following my Patient Profile campaign for Scleroderma Awareness Month efforts campaign, and still remains insitu
further to two lots of flucloxacillin 500mg, four times a day.
This reality is
turning into my digital ulcer nightmare, as antibiotics upset my gut flora.
Mydiet is critical to
maintaining my energy levels and optimum symptom management.
The reduced blood flow
in my hands during a Raynaud’s attack, makes for the perfect conditions for an
ulcer or calcinosis to form. This is why it is so important for me to prevent
any Raynaud’s attack in the first place.
Ulcers and calcinosis
can take months / years to heal, and are extremely debilitating, painful and
high maintenance in the meantime. Making every
task, including bathing, to require gloves to be worn.
I am fortunate in that
I have never experienced gangrene, which follows, should the infection had not
had an early enough medical intervention.
therefore, be VERY serious if not managed properly.
The discolouration of
the digits, or any of the other body parts affected, (this varies in
individuals), is a non invasive, visible indication as to Raynaud’s phenomenon.
To identify the level
of blood vessel involvement and to distinguish between primary Raynaud’s (Libby andJane),and secondary Raynaud’s, two diagnostic tests
are carried out.
These tests are
extremely helpful in determining whether there is the presence of an underlying
condition, such as an autoimmune disease.
This process requires
the body part, hand or foot, to be immersed in water at a set temperature, for
a certain length of time.
The heat generated from the body part is then
measured over time using the thermography equipment. This indicates the level
of blood flow and any possible impairment.
The Thermograph Imagery
machinery costs in excess of £5,000.
This diagnostic test is
used to identify possible blood vessel damage, which can indicate a possible
underlying autoimmune condition.
In a normal and primary
Raynaud’s patient the blood vessels will appear symmetrical and smooth-like.
In a patient with
scleroderma or other autoimmune disease, the vessels will have become distorted
in their structure and appearance, thus impacting on blood flow impairment.
Capillaroscopy equipment costs around £1,500
To read more about Nailfold Capillaroscopy equipment here
Huge thanks go to Dr Howell for making these images
Kevin Howell PhD ASIS FRPS MIPEM CSci
Clinical Scientist and Honorary Research Associate UCL Institute of Immunity and Transplantation
Royal Free Campus
Rowland Hill Street
London. NW3 2PF
Without a shadow of doubt, the entire global Raynaud’s community are
eternally grateful to Dr Howell for his dedication and commitment to the
Raynaud’s enigma over the course of his career within the NHS, which he is
currently celebrating his 25th year.
Many congratulations and Thank You Dr Howell, the Raynaud’s trailblazer.
To view the UK
treatment guidelines for Raynaud’s Phenomenon, Click here
To view the EULAR
treatment guidelines, Click here