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epidermolysis bullosa : Anyone out there who has a good knowledge of the condition and can help me with a basic question?

(12 Posts)
Chandra Mon 25-Aug-08 22:46:17

Some weeks ago I met a woman whose child has EB. She has moved to the area so his son could have access to better care, unfortunately as it happens when somebody is new to an area, she feels quite isolated.

We have many things in common, same language, very similar culture, the "expat feeling" etc. and our children are more or less the same age.

THe question is... I would like to do something for her and her child not to feel so lonely and have been thinking in inviting them to come for dinner, a play date or whatever.

The problem is that my knowledge of EB is quite reduced, I know that is a very delicate condition so, obviously, I don't want to do anything that can cause damage or upset. What would you recommend me to do (with regards to my house, food and children) in order for them to feel safe in this environment? How do I explain the condition to the other children (so they are careful enough)? Is there anything I should avoid? or, could you suggest something in particular as a first outing? (I won't be offended if you tell me is not a good idea, but please don't feel ofended at me being overcautious, as I said I don't want to cause damage or upset)

Chandra Mon 25-Aug-08 23:11:21


weeonion Mon 25-Aug-08 23:15:11

chandra - there is at least one other mum on here with expereince of eb. check out the bumps and bairns north of the border thread.

Chandra Mon 25-Aug-08 23:19:35

Thank you, I will keep the bumping and hopefully eventually I will find her.

DrZeus Mon 25-Aug-08 23:25:46

There is some information here:DebRA charity website
Hope this helps.

geordieminx Tue 26-Aug-08 08:24:12

I will email Vio, she is a MN'er who's beautiful son sadly died from EB last year.

Perhaps if you do a search on her name you will find her story?

geordieminx Tue 26-Aug-08 08:28:39

I think its probably best to ask the mum what you could do for her, and whether its possible for her to come over etc.

She will know her child better than anyone, and will know the limitations. I'm sure it will be fine though, and I bet she will be really pleased to have a friend in you.

Chandra Tue 26-Aug-08 14:15:57

Thank you DrZeus, I have been to the Debra site which left me with more questions to ask, hence this thread.

Thanks Geordieminx, I think that's the path to follow but before asking her I wanted to know if there are some points I should consider beforehand in order to avoid touching some sensitivities.

I also have a child with some special requirements and although I apreciate fully the effort people do to include him, I tend to feel very embarrassed when I have to say "I appreciate a LOT the extra work you have gone into to have us around but I'm afraid DS can't/shouldn't/may not be able to ___ "(fill the blank).

I will keep bumping in the hope that VIO sees the thread.

vio Tue 26-Aug-08 18:40:54

Hi, Chandra, EB is a very dreadful condition, it breaks my heart when hearing children were born and still living with this condition...I just hope that a cure can be found one day.

I think when you think of EB, like myself, the first time I was told about this condition and when the doctors tried to explain to us what EB is all was all a bit blur, first, i thought, its only skin so its not so bad and we just had to be careful, then we sat down and began to realise its a lot more complicated than just fragile skin, in fact, skin is the largest organ and when its failing, every single part of the body is not going to function properly and the effect it has on the sufferer can be desvatating.

The type of EB DS suffered was the most severe type, so his health deterioated very rapidly. I don't know which type of EB the woman's son has but EB skin means 'friction' is a 'NO, NO' hence, we couldn't stroke his face or wipe his tears. Direct pressure is ok but not encouraged so we could put a 'very soft wipe' on his face to absorb the tears but couldn't wipe it. Couldn't really touch him becos we tried not to cause any friction as we didn't want to damage his skin any further.

Theres no way to avoid 'friction' as babies or kids have no idea they have fragile skin, DS had very sore 'belly button' becos the clump on his belly button caused severe damage ( we didn't blame the nurse as no one quite knew how to handle an EB baby when he was born ), his belly button was never healed...a lot of babies and kids with EB, ( i was told ), either born with nails missing or they eventually fell off so it can be very distressing to see children with no nails. Blistering isnt limited to childrens skin but also inner body linings so eating solid can be very painful. For DS, sucking teats ( even its the kindest way as he was fed with a very soft teat) caused blistering and his mouth was filled with blood a few times.

Changing his nappies was very hard, it's hard to see his sore bottom and loads of prepartion before we can actually changed his nappy, we had to check if theres any new blisters, if there was, we had to pop it becos if we didnt then it will get bigger and when hes kicking about, it made it very difficult to pop it with a needle, it all seemed very cruel but it had to be done before we could change his nappy but then cleaning his bottom was tricky too, unlike other babies, you wipe their buttom with a baby wipe, you couldnt wipe an EB baby so you could only dap it with a wet soft wipe, could take up to an hour or more)...then the daily routine of changing his dressings...its worse when in the summer becos dressings dried out more quickly and when it dried, it sticked to the wounded skin and it's heartbreaking to take it off...its a rountine which could last up to 4 hours and i have to say, each dressing changed was long and emotional.

When theres no skin to protect the child, like DS, his thrumb was left with no skin at the end, and infection became another problem, becos of infection, the rotten skin with blood often smell unpleasant and anti-biotic was introduced...but then the result of anti biotic was that he would ended up with runny poo and it caused more nappy changed and very sore the problems caused by EB are endless.

Another issue was that becos of blistering, the body is constantly losing fluid so he needed special milk, high calories..but like i said, inner body lining was also affected, thats why he struggled to keep his milk down and we needed to give him infant gaviscon and other drugs which helped him to keep his milk down...dehyration can be a cause of death so its very important to make sure that he wasn't dehyrated but the final week of his life, he struggled to keep his milk cos blistering in his stomach..he was very weak at the end.

Becos the pain was unbearable, paracetmol and eventually morphine was used to ease his pain..but with caused 'constipation' and so he had a hard time doing a poo and it hurted him very much...his fragile skin made it harder for him to do a poo and he struggled.

All in all, EB is a very complicated condition, its not just skin, its every single part of his body..when one drug was solving one problem but it also brought another as a result and side effect of the a mother, i had to monitor 9 drugs a day and some were given to him 5 times a day so hes basically taking drugs every hour. Sometimes, I could see the effects of the drugs on him, it left him feeling very uncomfortable and very unwell and he struggled every single day ...( he's only a baby when he died).

You know now that when i hurt myself by accident, like cut my fingers when chopping vegetables, I never mourn...I would think of DS and the pain he had to endure and I will then feel a bit sad...I had a son with EB but I could never understand how much pain he had to endure, I wasn't him. But each time when I see his picture, ( like now i have his photo on my desk when I am typing), I think he really gave me the courage to live my life and be stronger and happier. I have alot of respect for people, children living with dreadful condition, and for their carer...I know everyday was a struggle and when you cannot plan or dream but can only take it one day at a time, you have to be very strong...I often think, we as parents are supposed to teach our children, for parents like me, our children teach us how to live our lives and everyday I remember his beautiful soul.

Chandra Thu 28-Aug-08 18:15:22

Vio, I'm sorry your little one had to go through this. I understand that talking about this may be painful to you, so apart of my heartfelt thanks for explaining this in detail, I'm sending you a big ((((hug))).

As you say, it is not only skin and there are a great number of things that needed to be considered. I was concerned about infection risks (I have dogs and I'm not exactly a model housewife blush) but also about the possibility of children play causing damage.

I think I have got a better idea of what to do and what to avoid, perhaps we should try to introduce the other children one by one so they can concentrate in being extremely careful. I will give them a ring as soon as they return from their holidays to see how we organise a visit.

Many thanks.

Chandra Thu 28-Aug-08 20:59:19

Actually, I have thought that perhaps a good way to help is to babysit for her from time to time. She is in her own so the oportunity to have some me time may be a good idea too.

vio Thu 04-Sep-08 18:42:08

sure she will appreciate your help. Any help will be nice I reckon.

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