This unfolding year is full of promise and possibilities for us at SDBM. We are well into the planning of our inaugural Annual Masquerade Ball, Fashion Show & Art Exhibition (fresh new webpage coming soon!). As exciting as the Ball is for all of us, I am mindful that we still face the same old challenges of raising awareness of the plight of skin disease sufferers.
That is why we have decided to highlight particular events each month throughout the year. This month, we will be campaigning about the high cost of multi-item prescriptions. Many skin disease patients are routinely given multiple items as part of their treatment. One of the most common reasons why topical therapy doesn’t work is that it isn’t applied. This is because, in many instances, people simply can’t afford to pay for the treatment. We will show you how you can make substantial savings by taking advantage of a little known scheme.
In February, we will be supporting world Rare Disease Day that takes place on the last day of February each year (28 Feb). This year’s theme is ‘Living with rare disease’. As the UK’s only charity that provides support to skin disease sufferers no matter what skin disease they have, we plan to highlight the plight of rare skin disease patients in the UK. Another reason we are supporting Rare Disease Day is the case of Shabana Islam, founder of SDBM.
Shabana has been living with her skin disease for more than 20 years. What makes her condition a rare case is that, according to the expert diagnosis, she should not have what they think she has. Let me explain. Shabana is now diagnosed (she has been given several other diagnoses in the past) as suffering from chronic actinic dermatitis (CAD). Here’s the kicker, the typical CAD patient is a man over 50 years. Trust me, Shabana is neither of those! CAD is incurable, it can only be managed. For a lucky 10-20% of CAD sufferers it just goes away.
So, what’s your story? Perhaps you are suffering from a rare disease, too. If you would like to talk, then contact us. For example, you can make a video, sharing how your skin condition has affected you; and for the camera shy maybe a voice note or written story. You can post directly on the Share Your Story page on this website. Alternatively, you can email your story or ask us to contact you.
January – Prescriptions
February – Rare Disease Day
March- Ichthyosis Awareness Week UK ISG
April – SDBM launches children’s stories
May – Sun Awareness Week [organised by B.A.D]/ Ichthyosis Awareness Month (US)
July – Disability Awareness Day
August – International Youth Day
September – National Eczema Awareness
October – World Psoriasis Day [29 October 2015]
November – Anti-Bullying Week
December – #GivingTuesday