Who am I?

My name is Helen Lill, and I’m a mother to a little girl who has a rare genetic skin condition called Epidermolytic Ichthyosis (EI). When our daughter was first born and diagnosed, I found that a lot of the advice I was given by our medical team was well-intended, but didn’t help in the way we hoped. Sometimes it even seemed to make her worse. So, I took to social media, and through the superb ichthyosis charities (UK Ichthyosis Support Group, and US FIRST), I was able to connect with others all over the world affected by EI. Together we made a support group, and there we shared experiences and gave advice to one another about daily life with EI, and that was honestly one of the best things I ever did to help our daughter. 

The support group is like family to us now, we’ve shared some of our darkest moments together, and there’s always someone there to help, to make you feel less alone, and to help give you the strength that you need to deal with that wound or help you figure out what to do, or even just to make you feel more normal for grieving the life you thought you’d have. Support groups are very powerful, and I can’t imagine how lonely a life with a rare disease might have been before social media.

Luckily, I’m also a healthcare person, and a medical researcher, who happened to have a chronic skin condition in my younger years, so between that, my research skills, and advice offered by others, we've managed to find good evidence-based solutions to help make everyone’s skin feel better. 

In my professional career I used to write treatment protocols, research papers, policy documents, present at conferences, and I used to teach other medical professionals how to do new things or change their practice, so I’m very much a person who believes in the scientific principles of medicine, endorses evidence-based practice, and I understand how healthcare works. 

Unfortunately, many of those affected by EI have lost trust in their healthcare providers, because they have had so many negative experiences. Being a person who walks on both sides, I feel like it’s my duty to provide a bridge between the two. So, everything I do with the support group includes finding academic references for what I advise, and encouraging everyone to connect with their dermatologist or their family doctor in order to help educate the medical world on rare diseases. The information is out there, but when a disease is so rare, it is so very hard for healthcare providers to know the details.

I think that if we as a community can show our healthcare providers what we’re doing and provide the evidence to support our techniques, then slowly, slowly things will change. Perhaps the next person that the medical professional sees with EI, they’ll remember, and give better advice next time. That is the hope, that one step at a time, we can increase awareness of EI and help make sure that the next new parent that comes along is given the best advice that we can offer, instead of everyone scrambling and making mistakes that cause pain and make parents feel so helpless.

So, who am I? I’m a mum to an amazing and feisty little girl who happens to have EI. I'm a researcher, an academic writer, a clinical educator, the founder of an EI support group, and a fierce and passionate advocate for all those affected by EI!