Testimonials from the EI Community

I asked the members of the EI support group to give examples of “Living with EI is…” and I’ll share some of the responses here. I warn you that reading them makes me cry, because some of them really sum up how hard it can be sometimes, but also because this is like looking into what my daughter’s life might be in the future. I just hope that we can realise our potential with this project, and that it will lead to a cure someday soon.

So, here goes. Living with EI is…

• No one wanting to hold my daughter’s hand at playtime because her skin looks and feels different 

• Being afraid of seams, tags, and edges on clothes because even ‘Seamless’ clothes cause blisters

• Not being able to drive in the car for more than 15 minutes for fear that the car seat will cause blisters, and knowing that every bend or speed bump will make it worse

• Having to plan 2 hours in advance of leaving the house, to make sure there’s enough time for the bath, the scrubbing, the wound care, the creams. Half the time we don’t make it, and no one can understand why. It’s very isolating.

• Having a fun day out and then finding all the wounds that day of fun has caused

• Never feeling able to take a break from the care routine, no matter how tired, sick, or hungry anyone is, the routine must be done, otherwise she suffers, and I will never be ok with letting her suffer.

• Everyone staring or backing away because they’re afraid it’s contagious

• Wearing special clothes to prevent raw skin wounds from normal play, and to try to prevent yet another skin infection

• Being afraid that her teacher won’t notice she’s overheating until it’s too late

• Being scared to cuddle my baby in case the heat from my body causes her skin to blister

• Having to buy a million pairs of shoes and living with the disappointment that comes when every single pair leads to a blistered ankle in under 5 minutes

• Soaking my daughter fully-clothed in the bath because her clothes have fused with her wounds

• Being rushed to hospital because of severe skin infections which led to sepsis

• Having skin infections so painful that you can’t move, sleep, or eat

• Watching my daughter get sent home from school or sent to sit in the hallway during class because her peers complain that she smells

• Having people think I abuse my baby because of how his skin looks

• Having people approach the stroller to see the baby only to recoil in horror and ask “What’s wrong with your baby?”

• Smiling tightly, and trying to graciously thank people when complete strangers tell me how I should fix my skin

• Missing out on all the fun stuff because you’re not physically able to go

• Having to use a wheelchair because my feet are just so sore

• Having to use a Dremel on my hands and feet just so they stay functional

• Growing up feeling lonely

• Being your own doctor, because no healthcare professional has a clue

• Having to become the expert in your medical condition because most healthcare professionals haven’t heard of it

• Having to think 5 steps ahead for every outing, holiday, trip, and activity

• An exhausting care routine, where no day can ever be a ‘lazy’ day

• Peers being afraid to sit next to you in fear that you’re contagious

• Being refused entry to a public swimming pool

• Being kicked off a public bus

• Being removed from a flight, because I didn’t have a medical note to prove my son and I were not contagious, despite repeatedly explaining our medical diagnosis

• My baby being refused by a private nursery, only to later find out they continued to accept new children after saying they were full to me

• Overcoming barriers medically, emotionally, and physically

• Not being able to go outside and play with the other kids because I can’t sweat like everyone else

• People saying “Oh my cousin had the same problem, you should try aloe vera, it worked great for her!”

• Watching from the sidelines while others fulfil the dreams you once had

• Never feeling like you truly belong because people are just being nice out of pity

• Hearing my 11 year old son tell me he wants to kill himself because he can’t live with the pain anymore

• My daughter being left out because even her own cousins don’t want to play with her

• People staring at us wherever we go

• My daughter praying to God to close her skin so that she can look like everyone else

• Constantly battling between trying to appear normal, and having to prove that you are in fact disabled

• Going through heartbreaking rounds of IVF because you’re terrified of passing it on to your baby

• Doing whatever you can to hide your imperfections from the world

• Not being able to buy the clothes you really love

• Knowing your dream career will forever be out of reach

• Spending 4 hours in the bath scrubbing your skin off to feel ‘normal’ for a couple of days, no matter how painful it is

• Fearing going to a friends house because their sofa is a colour that everyone will see the skin that has sloughed off while I sat there

• Everyone at school referring to me as “The boy with the weird skin”

• Having no decent clothes because my creams ruin all of them

• Being asked if I was burned in a fire

• Being told “You shouldn’t be on rollerskates”

• Feeling sad that I’ll never, ever feel good in my own skin, despite spending hours trying to feel as good as I possibly can

• My body not being able to keep up with what my mind wants to achieve

• Being reprimanded repeatedly by strangers for not looking after my child and that this neglect must have caused the skin redness, flakiness, soreness, etc

• Always feeling uncomfortable

• Always feeling out of place

• Feeling ugly and jealous of people with good skin

• Having to contend with the heat of summer by hiding inside, and the pain of my skin cracking from the cold in winter

• Wanting to go in the pool, but being afraid of everyone’s stares

Some positives, Living with EI is…

• Finding strength in yourself

• Learning how to read what your body needs

• Being empathetic and compassionate because we know how awful it is to be bullied and I wouldn’t want anyone else to feel that way

• Connecting with other families that become your best friends because no one else will ever truly understand

• Having the courage and confidence to speak out and try to bring awareness of the condition

• Having the ability to see beyond what people present on the outside

• Being strong, brave, and absolutely amazing