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Natalie

Natalie

Imagine your family’s medical appointments regularly taking up two whole days of your time.

“The stress and expense of taking the train to London with two children, travelling by public transport between hospitals and staying overnight is immense. Arranging care for my other children while I’m away is an added worry,” said Natalie.

“How do you explain to your employer that you need to take two days off work for a medical appointment and tell the children’s schools that you need to take them out for two days?” Natalie and two of her four children, Nathan (15) and Adam (1), have Epidermolysis Bullosa Simplex (EBS), a painful, genetic skin blistering condition. “Family life can be extremely busy. Nathan and Adam need help with their daily wound care routines and I have to stay on top of treating my own blisters to ensure I’m well enough to look after all my family.”
Natalie remembers: “I suffered particularly badly as a teenager. The blisters formed daily on my hands, feet and in my mouth, making every aspect of life difficult. They can be caused by the most basic everyday activities, like walking or even writing. I’ve found shoes have always given me the worst problem but recent developments in dressings and specialist socks, which DEBRA provide me with - have made a big difference to my quality of life. But even so, navigating around London with two children with fragile skin and overnight bags is extremely wearing and painful. “

These two-day trips to the specialist EB clinics at two separate London hospitals all changed when funding from DEBRA made specialist outreach clinics for people living with EB possible. “The DEBRA-funded outreach clinic has had a huge impact on our lives. We’ve been to about three now in Exeter which is a lot more local for us. A massive advantage is that we can see the full specialist EB team from hospital* in one place. After a couple of hours seeing the various specialists we have a break. DEBRA provides refreshments and a separate room to relax in, which makes the whole process less stressful. While I’m there I’m also able to meet with my DEBRA EB Community Support Manager, Miranda, to talk about any issues we have or support we need. Miranda has helped me apply for Disability Living Allowance to get extra support for Adam, which is a very complicated process. She has also helped us get assistance with our water bills. These can be very high for our family—when our skin blisters it bleeds and this means that sheets and clothes need washing much more regularly. Wounds can sometimes get infected too so it’s also very important to keep things extra clean.”

“The outreach clinics are also an opportunity to chat to other parents of children with EB, which is as important to me as the clinical care. I can talk to local families about things that are worrying me. It can be very isolating living with a rare condition like EB, so having the chance to share experiences is a real blessing. It would be terrible if DEBRA isn’t able to fund future outreach clinics.” The clinics in turn have given Natalie and her husband more quality family time together and the money they save on travel and accommodation costs can be spent on family activities for them all to enjoy. “We are really looking forward to some fun, family time in DEBRA’s specially adapted holiday home in Poole, later in the year,” said Natalie.

* Consultant dermatologist, podiatrist, specialist dietitian, physiotherapist, pain management consultant and EB clinical nurse specialist.

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