Anisa: dominant Dystrophic
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Our Family
We're a family of 6 and our youngest daughter Anisa, aged 5, has DDEB. She has 2 sisters and a brother. EB showed up new in Anisa for the first time in our family. I suppose you could say were an adventurous family who love the outdoors and exploring. In no way does our experience of a child with milder EB come close or compare with families managing children with more severe forms of the disease. Our experience is our own and our hearts and prayers go out to families who dream to be in our position. The Diagnosis Anisa was an unexpected gift and bringing her into the world brought immense love and joy to our family. Within days after she came into the world, we noticed some strange sores on her fingers and heels and her umbilical cord that just would not heal. We showed our two midwives and they weren’t sure and recommended topical anti fungal creams. More blisters appeared and my mum intuition knew something wasn’t right. Especially when we took off her socks and found her heel was blistered. I took her to our family doctor who was as baffled as the midwives and asked another doctor to take a look who thought it might have been pemphigus. She said to keep an eye on them and see how they go as she was healthy otherwise. The next day after seeing the doctor my worry and anxiety took me to the children’s hospital. None of the nurses or doctors at the hospital had a clue so they sent photos to the head of dermatology who was away lecturing at the time. He was so kind and actually took the time to come down to see us that afternoon to talk about what he suspected it could be which was EB Simplex. His words still ring to this day “she’s beautiful and she's going to be fine, and don’t Google it." Obviously he knew that I'd see more severe cases and start to panic. Anyway, after being referred to the EB clinic at Sydney Children's Hospital, we got the support, care and genetic testing to confirm that she has DDEB. The uncertainty of what’s happening to your baby is so scary then learning her condition is lifelong is really hard because you don’t know what to expect. Challenges of Living with EB Where once we let our kids play freely at every opportunity, as Anisa became mobile we found ourselves highly strung about going places and letting her play freely because we wanted to prevent as much injury as possible. Having older highly active siblings was also stressful, because they wanted to play with her to the fullest which would sometimes cause injuries. Again, learning to let go so she can experience life to the fullest was really important particularly since Anisa knows no limits. Having a child with EB is a rollercoaster. A painful journey of trial and error where the errors last a long time because once skins blisters, it stays fragile. The hardest part is balancing the desire to protect her skin with the necessary freedom to play and explore. We realized that we took the simple things in life for granted like your kid being able to play at the park and run around without being injured. Simple things like keeping cool on a hot day with bandages on and fully clothed and wearing socks and closed shoes, washing your fingers around bandages, or explaining to strangers about her condition were all new challenges. The constant injuries requiring immediate care, although we’re used to it now, was overwhelming at the start. Does it get easier? Yes in some ways, then new challenges come up….like when Anisa wants to ride a bike…..really fast! Oh my, we pad her up and off she goes, but not without injury and a few more grey hairs! We still feel so much anxiety watching her take risks, but we know we can't hold her back either. We still feel sad with her when the big wounds come and the days that follow as the healing is difficult, but we remind ourselves of all the kids who have wounds like that all over and focus on how lucky we are that she is doing so well. What has helped us get through We get our strength from Anisa as she bravely patches up her wounds and gets on with her day and lives her life to the fullest. Anisa is getting more independent and confident and continues to amaze us. She sometimes pops her own blisters and dresses small wounds. Even her teachers at preschool are so impressed with the way she instructs them on the process of dressing a blister. Whenever we feel down, we give thanks she has a milder version of EB and continue to love and care for her with all our heart believing that one day there will be a cure for everyone with EB. Our EB clinic has been invaluable as has the support from the EB community, friends and family. 
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Adaptive Wear Journey
It is said that necessity is the mother of inventions. In the beginning, her grandmother and I started making mittens out of cotton baby clothes and the tops of fluffy socks to stop her biting off her finger bandages as it was a serious choking hazard (don’t mention the silicone dressings we sometimes found in her nappy!). As she got older, we often held her back from playing outside and getting dirty simply because we didn’t have the time or space to do the lengthy dressing changes required each time they got wet or dirty. When Anisa was around 6 months old we stopped bandaging up her fingers and just covered her hands and wrists with dressings. These would get dirty so fast so we made little covers for them to extend their use. Then we thought why not just make reusable hand covers that have padding for protection already in them. Boom! Except for the fact that little Anisa loved to take them off! So we attached them to her sleeves! Nearly every shirt she had for around three years had hand covers attached. Yes, we went through a few shirts a day, but it was still quicker than changing bandages. I’m sure by now you can see that we opened pandoras box and began making all sorts of things to make life easier. When her palm wounds are healed, the hand covers make life a million times easier, and the best invention was the neoprene gloves we made so Anisa could go play in the beautiful Turon river, and many more after that. On special occasions she got matching hand covers that looked so beautiful. All of these little ‘inventions’ helped us get out and about and live a more active life with less hassle and frequency of injury. Where once her white bandages made her stand out, now her hand covers make her look like a super hero. Until EB is cured for good, my family would love to see a range of adaptive wear be developed that makes living with EB is easier, safer and more comfortable. Our Outlook We are so grateful we have everything we need to help Anisa and for all the effort going into finding a cure for EB. When Anisa was born there wasn’t a therapeutic on the market, now there are approved treatments and more in the pipeline. We think Anisa is so strong and beautiful and that her EB will not define her or limit her potential. We are definitely more hopeful and know that we are not alone on this journey. -LeeAnne, Anisa's mom Please take a moment to complete the below survey, designed by Anisa's mom, so that she can better understand the adaptive clothing needs of the EB community. Your input will help her and her emerging company to create unique solutions that bring greater comfort and freedom to those living with EB!
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