Life with too much skin: Grace Wallace lives with a rare condition, and conceived through IVF to avoid passing it on

Bathing in Janola twice a day is a ritual for Grace Wallace, to help with her rare skin condition.

Epidermolytic hyperkeratosis – which makes the 29-year-old’s skin grow much faster than usual – is also the reason she and her husband conceived through IVF, with genetic testing.

Wallace describes her skin production as being “on overdrive really. I produce too much keratin. With that, because there is so much build-up, any sort of friction will cause a blister, and when it blisters it is prone to skin infections.”

The Janola is to help keep those infections in check.

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It took weeks for medical experts to diagnose Grace Wallace, 29, with a rare skin condition when she was born. She’s pictured with her 5-month-old son Ari, who was conceived through IVF.

Christel Yardley/Stuff

It took weeks for medical experts to diagnose Grace Wallace, 29, with a rare skin condition when she was born. She’s pictured with her 5-month-old son Ari, who was conceived through IVF.

No-one else in the Hamilton mother-of-two’s family has the condition she was born with – and she didn’t want to pass it on to her children.

“I’ve read that often [children] inherit it a lot more severe than the parent. There are people in America who have it a lot worse, where it’s internal. So they’re tube-fed, because if they swallow food their oesophagus blisters.

“And I was like, oh god, I can’t handle mine now, let alone the next level up.”

Because of the 50/50 chance of children inheriting the condition, Wallace and husband Ray opted for IVF, with pre-implantation genetic diagnosis (PGD) testing of the eggs collected.

Wallace also remembers her mother’s tales about her as a child.

“My arms, legs and torso were bandaged, and just screaming at them being changed. I was like, oh my god, Ray would divorce me if he had to look after me and a baby.”

The couple now have two boys: Bowie, nearly 4, and Ari, 5 months.

“I've read that often [children] inherit it a lot more severe than the parent. There are people in America who have it a lot worse, where it’s internal,” Grace Wallace says.

Christel Yardley/Stuff

“I’ve read that often [children] inherit it a lot more severe than the parent. There are people in America who have it a lot worse, where it’s internal,” Grace Wallace says.

In Bowie’s egg collection, testing showed five of seven had the condition.

For Ari, only one egg came back without the condition.

Wallace delivered both her sons by via caesarean, which meant she had to monitor the wound closely.

“They did have to be a lot more careful than with a normal C-section. It has definitely healed better this time, but still got very infected.”

When Wallace herself was born, the first sign of her condition was when she was about 30 minutes old,

“They had wrapped me up in a towel, and when they took the towel off all my skin fell off with the towel.”

It took weeks for medical experts to diagnose Wallace, and so far she hasn’t been able to find anyone else in New Zealand with the same condition.

Pain and limited mobility are her biggest challenges.

A trip to the letterbox can be agony due to the friction on her feet when she walks. Simple things like holding her baby can cause blisters on her arms and legs.

“That is probably the hardest thing – managing the blistering, so I can do stuff and not get infected.

“I take pain relief, and most weeks I am on antibiotics.”

The condition affects all of Wallace’s body, but tends to be worse around the joints.

Simple things like holding her baby can cause blisters on Grace Wallace’s arms and legs. She’s pictured with 5-month-old son Ari.

Christel Yardley/Stuff

Simple things like holding her baby can cause blisters on Grace Wallace’s arms and legs. She’s pictured with 5-month-old son Ari.

Growing up, she wasn’t able to play sports.

“I remember one of the kids at school being quite rough and pushing me over, and the tops of my knees came off.

“So I have to be quite careful. I was quite scared of people. When I first started school, Mum sat with me for the first eight weeks, because I was a lot more fragile. I am a lot sturdier now but my feet do blister more.”

Wallace has learnt how to deal with the uncommon condition through “trial and error”, sometimes trimming the extra skin, and moisturising as often as she can.

“I exfoliate in the bath and I go for a facial once a fortnight to keep my face looking better, otherwise it would look like my hands. My face and neck have it, but I scrub it off as much as I can.”

She’s also used to getting looks from people when out and about.

“I guess because it looks so different.”

Some people are reluctant to take money or cards from her, but Wallace says “it’s just skin”.

“I love getting my nails done, but it’s been very hard to find a nail lady who will touch me. But people are going to stare at my hands. I want them to look nice.”

“Some people are just naturally inquisitive people, some people are rude, but some people just like wondering. A lot of people think I’ve been burnt, a lot of people think it’s psoriasis.”

Grace Wallace and husband Ray conceived both their boys through IVF so they could do genetic testing.

Christel Yardley/Stuff

Grace Wallace and husband Ray conceived both their boys through IVF so they could do genetic testing.

For ease of getting around, Wallace uses a scooter and last year also got an electric wheelchair, to allow more freedom to venture out with the kids.

She’s a full-time social worker with a Te Awamutu organisation which supports people with disabilities.

But often after a full day – “going there, getting ready for work and then up and down and meeting clients and stuff” – she’s worn out.

Her condition also means a lot of the household tasks fall on her husband as, while she’s capable the consequences aren’t worth it, so the evening meals are done by Ray.

“It sounds so bad, but standing on my feet would blister and holding the pots and stuff and cutting the food, it would all blister … I’ll be up all night dealing with the blisters.”

She also needs to plan ahead and make sure Ray has prepared her for the day – like opening the baby bottles.

Despite the challenges of living with a debilitating condition, Wallace remains upbeat.

“I don’t know any different. I don’t know what it’s like to have normal skin, so I just make the most of it.”

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