A mother-of-two has revealed how she leaves a trail of skin behind her
due to a rare condition that causes her to shed 14 times more skin than normal.
Melanie Bradley suffers from the rare disorder Bullous Ichthyosis. In a cruel
twist of fate her 21-month-old daughter Rebecca suffers from the same
condition.
Melanie Bradley and her daughter Rebecca both suffer from a rare disorder that causes them to shed their skin far quicker than normal
Mrs Bradley, from Atherstone, Greater Manchester, said: 'My skin sheds
rapidly, so overnight I can shed the equivalent of what a person with
‘ordinary’ skin sheds in two weeks. 'I'm covered in scales from head to toe.
It's can be so thick to the point that I can barely move, but at the same time
it's so delicate that the slightest knock can break the skin. It can be quite
awkward, because you leave a trail of skin behind you. A lot of vacuuming goes
on in my house.'
Medics gave Melanie a 50 per cent chance that her children might be born
with Icthyosis. Although older sibling Daniel, three, was born free from the
condition, his younger sister was not so lucky. Mrs Bradley said: 'As soon as
Rebecca was born it was obvious she had it. I'd had an emergency C-section so
didn't see her straight away, but I overheard the doctors discuss it and obviously
I was devastated. When I first saw her, and how her skin looked I just felt
numb. It was the last thing I wanted. But I knew that I had to cope and get
over it - and who better to raise a child with Ichthyosis than a fellow
sufferer. I worry for mums that haven't been through it themselves but Rebecca
is already starting to understand her condition, which is great. She's already
rubbing cream into herself, and she notices when she has lose skin. She'll just
have to learn her limitations.'
Advancements in medicine mean that doctors are able to recognise
Ichthyosis as soon as possible. But when Melanie first began to suffer from the
condition she was not so lucky. 'When I was born the doctors were totally
baffled. The top layer of my skin had been stripped off during birth and the
doctors had no clue what was going on. My skin was so thick - I couldn't bend
my knees until I was about three, and I had to wear slippers to school because
they were the only shoes that didn't hurt. Fortunately, things were different
for Rebecca.'
The stay-at-home mother must follow a strict care routine to ensure that
her and her daughter's skin is properly hydrated. 'Our skin is very susceptible
to infection, so we have to be very clean, but we also have to bathe and shower
a lot to get moisture into the skin,' she said. 'My daily routine starts with a bath or shower using emollients, which I
do twice a day. It then takes a minimum of around 30 minutes just for my skin
to dry off, then I have to liberally apply creams all over my body. I then have
to let the creams soak into my skin for at least a further 20 minutes or so
before I can get dressed. It takes up to two hours for me to just get ready in
the morning and ready for bed at night. I then have to do the same for
Rebecca.'
Close-ups of Melanie's skin: Is it not waterproof and very susceptible to infection
The 34-year-old says the blisters that come with the Ichthyosis are the
most painful part of the condition. 'The blisters can appear anywhere and be of
any size. I once got one from my elbow to my wrist - it was awful. They make
getting around very difficult, and antibiotics and dressings are always needed
when you get them. During my childhood Mum had to burst the blisters herself
using sterile needles. Even now I sometimes have to do the same.'
Melanie with her husband Vincent, son Daniel and daughter Rebecca: I just want people to know that, even though it's difficult to live with, you can cope
A further bizarre symptom of Ichthyosis is that the skin is not
waterproof. 'We lack a specific protein, so the the skin absorbs water. It
leaves the skin white in colour and very soggy.' Mrs Bradley now runs the
Friends of Ichthyosis website and charity, which has been successful in giving
advice and support for fellow sufferers. The mother added: 'I just want people
to know that, even though it's difficult to live with, you can cope.' 'I never
thought I'd marry or have children with skin like I do, but I have a wonderful
husband, Vincent, 30, and two beautiful children. I am living proof that
anything is possible, and there is still so much more I’ve yet to achieve.
There are lots of people in this world who are far worse off than myself.'
The skin condition can cause painful blisters
Bullous Ichthyosis affects less than 1 in 100,000 people. Hermoine
Lawson, of The British Skin Foundation, said: 'Bullous ichthyosis, is a rare
form of inherited ichthyosis. At birth the baby's skin seems to be fragile and
may show blisters. 'Skin infections are quite common and can lead to a
characteristic odour. There may be a reduction in sweating in childhood, which
improves later in life. It is transmitted as an autosomal dominant disorder,
which means that one of the parents may be affected. However, in at least half
of affected children, neither parent is affected; therefore the child has
developed a new gene fault while growing in the womb.'
Source: Daily Mail UK
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