Diana Perry CEO writes
WOW, what a turbulent 18 months we have all had. Like many, this past year has been our biggest struggle yet.
We were really excited last year planning our Anniversary Dinner Dance, celebrating 21 years of being a Charity and 25 years of my voluntary work for the ED Society, but Covid-19 brought all that to an end!
When my son was first diagnosed, like many of our families, I had never heard those two devastating words ‘Ectodermal Dysplasia’ before. My first son was born in 1991 and diagnosed with ED 2.5 years later, my second son was born in 1995 and was diagnosed with ED within days. Once we had a diagnosis, I realised I had a lot to learn to help the boys and found a support group.
The group was set up in 1984 when two mothers of children affected by ED met by chance, and with the help of Professor Angus Clarke, arranged a meeting for the few families known to them. At that time there was no internet or emails, so running a support group and finding new families was extremely difficult. However, I contacted the group in 1996 to offer some help. The next I knew, I was sent the address book of 50 families who were in the UK, given the Building Society book which held £200, and my journey began.
When I first became involved in the ED community, receiving everyone’s questions led us to find answers, support research, ability to write articles, create our own book ‘A Guide to Ectodermal Dysplasia’ and much more. From this, we have gained a wealth of experience and have been able to help medical professionals learn more and more as the years go on.
Over the years I have laughed, and I have cried from the many stories our community have shared. Such as the boys who lost the ball whilst playing table football and then used their dentures as a replacement. But then my heart breaks when parents tell me of their beautiful children being bullied and referred to as little vampires.
I have loved the happy and joyful stories of all the children’s successes, playing sport at championship level, becoming models, going to university, becoming musicians and many more.
My passion for the last 25 years has been to help our ED community, and families like mine, by bringing more awareness of ED to schools, authorities, and medical professionals. But it’s not just about bringing awareness, it’s education.
We advise school staff on how best they can help children maximise their education and enable them to reach their full potential. We help individuals and parents obtain Government benefits by offering our support during the application process, appeals and by attending tribunals. We speak with doctors, nurses and give countless presentations at conferences globally, the list goes on. You can read more about what we do.
All this helps our ED families at their worst times of fear, worry, struggles, and feelings of helplessness.
The ED Society is involved in several research projects, one of which is the exciting XLHED Treatment Trial, where three XLHED subjects were treated with a course of ER-004 intra-amniotic injections during the third trimester of pregnancy. The results have demonstrated that this prenatal treatment has a profound and life-changing effect on these infants.
The treatment normalized sweat gland function and associated thermoregulation, and improvement in dentition and respiratory function were observed.
It brings us closer to an amazing time when children born with XLHED could have working sweat glands! You can find out more about this research and the clinical study which has just begun here.
Without our supporters, your passion, and your dedication to us, we would not be where we are today. WE ARE STRONGER, TOGETHER!