Thursday, January 18, 2007

Erb's Palsy Support Group

I have mentioned this briefly in a previous post, I just wanted to write how I feel about it...

Erb's Palsy cases are rapidly growing in number, I am thinking we must do something about it. I don't know what exactly but I am willing to learn more and what has been done about it in different places and will take it from there.

On my visit to Zawiya Hospital, Physiotherapy Department last week to arrange for the electrical stimulation for Meral's hand, I noticed that (just noticed I didn't ask and I didn't see any numbers) they have average of 4 new cases a month. It seems like it doesn't matter where you give birth, a private clinic or a public hospital, you will find cases from every where.

All the doctors do after the damage they ask you to take your child to physiotherapy then the therapist will show you a set of exercises to perform at home when you are not having them do it for you. If you need to know more you need to ask more because no one is going to tell you any thing.

I need to ask more and learn more about it of the sake of Meral. I would like to know what kind of sports can erb's children be engaged in? or what kind of special care they require at school? I started to think about getting Meral to start going to daycare, wouldn't it be tough on erb's children if other kids started to make fun of how their hands look like? and shouldn't there be a special care for them especially when they play!? sometime it is hard for erb's palsy patients to keep their balances (I notice that when Meral falls down, most of the times she fell partially on her face because she can't bring her injured hand forward as quickly as the other one to hold on to the ground).

I would like to do something for erb's children and their parents like a support group where we can provide information and raise awareness. We will see how it goes, I let you know.


AngloLibyan said...

I had no idea about this condition until I read about it in one of your posts, I think you are very brave to talk about something that is affection your own daughter, this is the way forward, hiding is not going to help her or you.
Perhaps you need to get in touch with some of the parents that come to hospital with the same condition, give them your email, gather as much information as possible, then you can start a help group, I really wish you success, you are a good mum and I hope inshAllah the lovely Meral recovers or at least does not get affected by this too much.
you idea about a help group will help when the time comes for Meral to go to school as you will be able to explain the condition to the teachers who in turn should tell other children about it, this might reduce the chances of anybody making fun of Meral but at the end of the day children can be cruel and as long as you are there for her (and her dad), she will not be affected by this, just make sure that she has as normal as possible life as anyone else so that she grows up knowing that it is not a very serious thing and that she is much luckier than some other poor kids AlHamdulillah.
May Allah give you the strength to do all you can for her and InshAllah you get that group going, if there is anything I can do please do ask or email me (email in profile) good luck and God bless.

MaySoon said...

AngloLibyan I thank you so much for your support and for the nice encouraging words you said... and for the suggestions on the help group, Inshallah that is how I am going to start :o)

So kind of you to offer your help.. Thanks again.

dania2004 said...

hey Maysoon..
i came across your blog when i was checking Libyeea latest post .. i read all your posts ,, in fact i hoped that you have more posts coz i was injoying it alot..
well i`m a mother of a three years old "Dania" my life changed after i gave birth.. i was working at the time and didn`t want to stop and now i`m studying my masters in UK ... i feel that we have simillar circumstances,, i even hate eid and its mess .. i`m a devoted mum but still have alot of things to do to myself which sometimes make me feel guilty!..
anyway .. i know that Meral (what a beautiful name)had a condition that became common in libya..and as you mentioned whether it is private or public hospital the result is the same.. i once asked a doctor about this increasing phenomena.. she smiled and said : can you prove that it is that common,, no statistics ,, no legal actions,, no threatens to close this clinic or that .. so no one will even care... i was so depressed.. i know that this conditon is not lifethreatening.. and children will regain 80% or more of their hand ability (correct me if i`m wrong) but i`m just concerned about the other children.. Meral is lucky to have such an educated woman who is aware of the condition ,, but the other children will face much harder situations if their parents are ignorant or simply don`t care..
the girl is lovely she has a face of an angel.. this conditon is temporary as far as i know..
The supporting group is a genious idea but do you think it will work in libya!!! anyway don`t loose hope.. just try.. you will not loose anything ..

Um Dania

MaySoon said...

Um Dania.. Welcome to my blog great to have you here.. I do feel that we have some things in common.. Rabi u7fodlk Dania she's so cute Mashallah, and Allah euafqek in your Masters, best of luck.

Guilt!..yah we do feel that all the time, don't we? I had a year in hell when I first went back to work force after giving birth, but as I mentioned before I am always trying to do the things she loves after I go home and enjoy our time together.. and I still have that guilt!

You are correct about the children regaining hand ability, if their parents start early and keep up with their physiotherapy and electrical stimulation, also it depends on the case and how sever the damage is, for Meral we still have less than a year to see the final results. Alhamdulilah.

I saw worse cases, in which the child can not move their fingers, it is heart breaking, and what makes it worse is that nothing is being done as you mentioned, all they will say is it's Qada o Qadar, and will tell you that the doctor actually saved the child's life to leave you with nothing to say but THANK YOU!? Anyway about the support group I don't know if it is going to work here but I am going to start small with few other parents and we will see how it will go from there.

Thank you once more for your kind words, I wish you success and a healthy life for you and your family.

Lebeeya said...

I am really sorry about Meral's hand. Subhanallah, I didnt know about Erb's Palsy before. Thank you.

Starting a support group is a fantastic idea. You are an amazing mom and the best thing you could do is educate other mothers on how to treat their child that suffers from the condition. Many people who have children with special needs tend to neglect and make them feel like they are not as other children.

I wish you all the best inshallah and I really wish there was something I could do to help. I promise when I move back to libya, we will try to start an association for children with special needs. You will be the presidant and I will be your assistant. What say? ;)

I really hope Meral's hand gets better.

MaySoon said...

There you go again Lebeeya.. you managed to put that huge smile on my face :oD
Thanks for the kind words :o) Yeah let me know when you are coming to Libya so we go out have coffee some where! and discuss have fun and best wishes Happy Hijri Year to you and family.

Keepsmile5 said...

Assalamo Aliekoum
Hey Maysoon, I really enjoyed reading your blog, it's very very interesting.
Well, Talking about supporting patients and their families is really a very interesting thing..
Dear Maysoon, I totally agree with your idea about making supporting groups which can help patients and their families who suffering, either due to medical mistakes or due to Destiny..
I think we all should work together side by side,with our doctors 'cause doctors need our help, they can't work without our help. I also suggest making support groups for patients of diferent diseases and various disabilities, like Erb's palsy, Down syndrom, heart disease, renal disease, Caeliac, and many other health problems . I think such groups as you said could help suffering kids and suffering families to get more knowledge and better understanding for their problems and how to deal with it..
I would say that there are many cases of Erb's palsy in Libya, but I think it is still happen every where around this world with the same incidence even in western countries, but the difference in the care and support for sick kids and their parents or the support to all patients in general.
Finally, I wish that "Meral" will recover completely and overcome it " It's a matter of tym I guess"
and thank you "Maysoon" for this interesting topic.

MaySoon said...

Keepsmile5, thanks for your comment and for your support. I do agree with you that there should be support groups for patients of different diseases and their families, also support groups are no help without the help of doctors, thank you for contribution.

ArtDrawer said...

Hello people, I send this email as I'm an adult with erb's palsy injury caused during delivery. Even the way I had a treatment for it as revering the bones to opposite side, doctors last think in nerve surgery.
What made the matter worse that six years ago I had a medical operation to get my arm straighten. It was behind the elbow but I lost most of bending degree for my arm. Now I got worse sides from not rotating shoulder and not bending elbow.
All I wan to say that injury is avoidable in birth but what is worse it could be caused in accidents usually motor and bike ones.
Last two comments, I get troubles when I go to get driving license and I feel that I'm guilty to have this done. Also, there is no right for erb's palsy injured people in any place like schools, hospitals, flights or other.

Just do not make erb's palsy people pay for what they did not have committed .

Wilhelmina said...

Good for people to know.

Caitlin said...
This comment has been removed by the author.
Caitlin said...

Dear MaySoon,

I found your blog while searching for Erbpalsy support groups. I was born with erbpalsy in my right arm and now am in college. Just last year I found out that my friend also has erb's. We were both astonished and felt extremely blessed to have found each other. I grew up thinking that I was the only one with this condition and that there was no one that could relate to some of the challenges that I faced because of my arm. We have talked a lot about how this has effected our lives and have come to show each other different ways we compensate. Now she is tall and athletic and has played everything from soccer/football and lacrosse and I am very short and used to competitive figure skate and tennis. It never occured to me that my arm should stop me from doing anything but that it was instead an extra challenge. Just being raised to realize that something like this can effect as much as you let it and through all the frustration and sometime embarrassment, my friend and I have both made it through quite well I think. After all it is these challenges that made us stronger women. I hope your daughter is able to in some way embrace this and grow through it and seize every opportunity.

God Bless,

Anonymous said...

Hello, I am glad you are being strong for your daughter. I have erb's palsy and am almost 30 years old. I was diagnosed with it when I was born. The only thing that I went through was physical therapy because at that time, my mother could not afford the surgery. I honestly have to say that I resented my mother for years due to the fact that she did not get the surgery because as I got older I was picked on b/c my arm looked different and a lot of people noticed. I had to overcome and adapt a lot to try and fit in. I am unable to turn my left arm over to where my left palm is up due to the nerve damage. Through high school and college I pushed myself and decided to play women's lacrosse. I hid and still hide today that I have erb's palsy. The only person that knows is myself and my mother; I haven't even told my fiance. I have decided to try to get some more information and was thinking about getting the surgery now that I can afford it myself. I wasn't sure if anyone knew of any other support websites or doctors that specialize in this type of surgery.

Prolifixs said...

Check out the United Brachial Plexus Group: There are thousands with this injury and this group understands.


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