Here in the United Kingdom, summer is gradually transforming into autumn. The decrease in temperature can be seen by the change of color in the leaves, as well as a change in color to my fingers and toes.
Even on a hot summer’s day, I struggle to maintain a healthy normal color for my hands and feet. The smallest of breezes, or a draft, is sufficient to set off my Raynaud’s symptoms.
As all patients know, all too well, there is no cure for Raynaud’s.
During the past two decades, I have learned ― the hard way, I hasten to add ― that prevention is most certainly the best way for me to manage my Raynaud’s hypersensitivity. My nemesis season is Winter.
Consequently, my reality for optimum management keeps me housebound for most of the year. Intense hibernation and house arrest are a foregone conclusion from October to April.
A seasonal change will bring a different set of symptoms to juggle.
“You should get out more” is certainly not a viable option for me, while trying to maintain a constant body temperature, in the hope of preventing a Raynaud’s attack.
During a Raynaud’s attack, my entire body will go into spasm and I lose the color in my hands and feet.
The time it takes to eventually warm up again, bringing the color back to my extremities, will vary from minutes to hours, depending upon the intensity of the attack. This then will be followed by complete exhaustion, while my body restores its energy levels, which, thanks to my scleroderma symptoms, are minuscule at the best of times.
Fatigue remains one of my biggest challenges.
Before I took the medicine bosentan, I would have ulcers constantly on my fingers and, sometimes, on my toes.
I cannot describe accurately the excruciating pain that ulcers bring, along with the time-consuming process to get them to heal. If they do not heal and become infected, amputation of the affected digit or area is a realistic possibility. Hence, my strict house-detention rules.
I included digital ulcers as one of the many unmet clinical needs of the scleroderma patient in my article for Rare Disease Day 2017.
In particular: Deani, U.K.
and Kelli from the U.S.
There is no cure for Raynaud’s, but treatments altering blood pressure, while widening the blood vessels, attempt to maintain the circulation and blood supply.
In my advisory role to the European Medicines Agency (EMA), my suggestion that digital ulcers be included in all scientific clinical trial protocol has been endorsed. I’ve covered management of digital ischaemia in scleroderma and Raynaud’s, management of Raynaud’s phenomenon in scleroderma and Raynaud’s management of digital ulcers.
The editorial of the most recent edition of the Journal of Scleroderma and Related Disorders, (Vol. 2 Issue 2, May–Aug 2017), sets out “The critical need for accurately defining digital ulcers in scleroderma.”
The research article “Defining skin ulcers in systemic sclerosis: systematic literature review and proposed World Scleroderma (WSF) definition” is contained within the same edition. Both the editorial and the research article discuss the difficulties that digital ulcers pose in their identification, management and treatment.
The topic of digital ulcers being discussed within the journal is very encouraging to the patient. In my view, digital ulcers, though not life-threatening, per se, have not been given the medical and pharmaceutical recognition they deserve, because they cause complete misery to the Raynaud’s and scleroderma patient.
Living the dream, scleroderma style.
October is Raynaud’s Awareness Month.
Follow the Raynaud’s Scleroderma Awareness Global Patients Facebook page for the latest updates.
#RareDisease #Hope #Belief