That club consists of members who keep failing on systemic treatments. Dupilumab was supposed to be the miracle (and for many it is and continues to be). However I’ve now tried Dupilumab, Tralokinumab (although I was only on this for a month and needed to jump on to something more fast acting), Abroctinib and will now be going on to Upadacitinib.
While at my last Guy’s appointment I was enrolled into the “Genetic analysis of eczema subtypes” study which as the title suggests is researching the genetic components of the condition and how it might better be treated.
For instance in my case, whether there’s something which can show that someone similar to me would respond better to one systemic over another. Meaning a patient can go directly onto what they will respond best with.
It involves an initial batch of appointments and then an appointment around every 6 months which will line up with my usual Guy’s appointments. Travel is reimbursed, although this can take around 2 months. Which I do think is disappointing as people are already donating their time.
There’s also optional skin biopsies which is essentially where a 6mm core of your skin is taken for analysis. The biopsy appointments are paid at £60 per appointment and they would ideally like for me to have 5. They do require a few stitches, take some time to heal and can leave a small scar. Just to make you aware if you’ve never had one, they're not pleasant and its almost like a minor surgery.
Although it’s a significant time commitment I feel it’s important to do so to help push forward Eczema research. However the primary reason I say all this is not to pat myself on the back but to highlight that there are a huge number of organisations/hospitals/charities etc who could really benefit from the help/insight/experience of an AD sufferer or carer.
Due to regulation, outreach can sometimes be difficult so if you reach out to them first it opens the door for them to be able to use you. It’s just something to consider as this was how I originally started my work with Sanofi which led to so many other really inspiring opportunities. I’m soon to start work as an ambassador for Changing Faces, on the advisory panel for Eczema Outreach Support and a PIP panel member for NICE.
Comments