Living with EB: Jennifer and William’s story

My name is Jen, I’m 34 years old and live in Prescot near Liverpool. This is my EB story.

I have dystrophic epidermolysis bullosa (DEB) which was only diagnosed properly when I was nine years old. I was born with a blistered thumb nail, which gave the indication to my mum that there was a possibility I had EB. Doctors had no idea what EB was in the 90’s, so it took a long time to finally be seen by specialists at Great Ormond Street Hospital. I’m now under the care of the amazing team at Solihull Hospital. They have been so supportive over the many challenges that EB throws my way and all the other health issues I’ve had, kind of unrelated to EB, but ultimately impacted by it.

Family life, parenthood, and living with EB

I’ve been married to my amazing husband Matt for nearly 10 years, and we have a four-year-old son together called William. William also has EB and is the bravest person we know. We love travelling and enjoying days out together, fresh air is our medicine! We’re really lucky to have a supportive family around us that step in when we need help. They’re just a phone call away when we need a moan or a cry when we’re having a bad day. I work part-time at my local college as a Finance Officer; I started as an apprentice in 2010 and never left. I love working there, they’ve been so supportive and flexible, especially when I have bad days and lots of hospital appointments.

Making the decision to become parents

We made the decision to have a child knowing that there was 50% chance that I could pass on my EB as it’s a genetic condition. I had a c-section and was supported by the amazing Solihull nurses, Carol and Kal. Carol has been there since I joined from the Children’s Hospital, and her being there at my little boy’s birth was so special. They assisted everyone involved and trained them on how to care for my skin, their support was invaluable and I’ll always be indebted to them. We knew William had EB when he was just 10 days old. During his first bath, he removed all the skin from his leg. I’ll never forget that feeling, it breaks my heart when I think about the realisation that his life changed forever.

I would describe EB to someone who has never heard of it as a nightmare that you can’t wake up from. There’s always pain, there’s always an itch, there’s always a prescription order for dressings and pain relief at the pharmacy, there’s always a hospital appointment in the diary.

My analogy I always use is the velcro in the layers of our skin don’t work and we blister and wound really easily with friction; our skin is as fragile as a butterfly’s wing. Sometimes it goes over people’s heads, sometimes people are interested. My answer if someone asks if William has “been in the wars” or “has he fallen over?” is often just ‘yes, he has’, whereas my husband is our advocate and will tell people what we live with.

What a typical day with EB looks like

A typical day for us starts with pain relief before dressing changes and snuggles before the heart ache of removing dressings and lancing blisters. My heart will never not sink knowing how much pain William is going though during this time. Matt really helps out during dressing changes; he got thrown in at the deep end when he met me and has never been phased with mucking in and consoling us both when we’re in so much pain.

After dressing changes, it’s time to get ready for pre-school and work. There isn’t a day that goes by where William doesn’t hurt himself, so there’s always more wounds and blisters to see to when we get home. Then the heartache starts again at bath time, with more pain relief needed to actually get in the bath. And then the cycle starts again.

How DEBRA has supported our family

I first heard about DEBRA through visits to Great Ormond Street Hospital. My mum received help from their Community Support Team when I was younger. I remember going on days out with children just like me on DEBRA members’ days. Being around people who understand everything that EB entails is in some way relaxing as you don’t need to pretend or cover up your condition.

We’ve had so much help over the years from DEBRA, more so in the last few years since William was born. From disability living allowance application help, grants for fans and funding from DEBRA and WhizzKidz for a wheelchair for William. We’re so incredibly grateful, the support has been life changing, I know it sounds cliché, but it really has. Knowing William now has a suitable wheelchair to get about on bad days, especially since he is starting school in September, puts our minds at ease. Our DEBRA Community Support Manager, Gemma, has been so supportive. I wouldn’t have been able to get through these past four years since William was diagnosed without her help.

My advice for families beginning their EB journey

My message to anyone starting off on their EB journey is to accept there will be bad days and focus on the good things in life. A positive mind set and a ‘just get on with it’ attitude has allowed us to enjoy life to the fullest, even with some bumps along the road! Do get in touch with your local DEBRA EB Community Support Team contact to assist with anything, big or small. Early education on this condition is key, especially for nurseries and schools.

Jennifer Taylor