August 23, 2011
Hallo ! I have 2 sons and they are sick with Duchenne Muscular Dystrophy sickness. Is there any cure for that?
Category: Muscular Dystrophy
I have two sons. They have Duchenne Muscular Dystrophy sickness. Elder is 6 years old, and the younger 2 years. Doctors say that there is no treatment for this sickness nowadays and they will live no more than their 14-16 ages. Is this true. Is there anyone who knows if anyone having this sickness was cured positively ? Thank you very much for your answers.
4 Responses to “Hallo ! I have 2 sons and they are sick with Duchenne Muscular Dystrophy sickness. Is there any cure for that?”
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August 23rd, 2011 at 9:04 pm
Your doctors are correct. There are a variety of treatments that are basically palliative and the natural history is as has been described to you.
August 23rd, 2011 at 9:18 pm
I am very sorry for the diagnosis presented to you.
I hate to confirm it is true, however, survival rate is sometimes around 25 years, not 14/16. It depends on each case.
I hope that by the time they are 14 though, advances permit them to recover.
I wish you the best of luck.
August 23rd, 2011 at 9:34 pm
There is NO cure for MD. THAT, is a fact. I’m sorry to be insensitive but asking on Y!A – you will get the answer you are asking for.
However… for the doctor to say that they “will live no more than their 14-16 ages.” is rather insensitive and ill-informed. While it is ture that kids with DMD don’t live very long, 14-16 is not always true.
Depending on the severity of the condition in the individuals and today’s progressive knowledge of the disease, and therapy and medical technology, DMD kids are living longer.
The most important thing is… allow them to be kids… and do whatever they can to enjoy life as kids.. within reason of course.
I have a good friend (of 14 years) who died from DMD last year. He was 32.
The reality is… and this is the truth that you will have to learn to live with… most kids with DMD these days die in late teens or early twenties..
BUT… they are NOT “sick” as you put it. They are born with it. It is not a “sickness”. The condition is hereditary. The last thing your kids will want is for you to start blaming either of the parents. What they want now is a good life where they can enjoy life to the full and parents who will be there for them – as they WILL become VERY aware that they are different to other kids.
There is A LOT of resources on the internet about this condition. One of the best resources is the Australian MDA website. Link below.
http://www.mda.org.au/
I am NOT a parent of a child with DMD so I don’t know what it is like. But I have virtually cared for my late friend outside his home/family environment for over 14 years and have been involved in activities with other young men with DMD. So I think I do have some idea of what is like to be with someone with this condition.
I strongly suggest that you seek support and people to talk to about this condition. Even if you are NOT into “support groups” (I know that many people are not comfortable with them) – at least seek out knowledge from people who KNOW and live it.
Hope this helps
August 23rd, 2011 at 10:20 pm
wow I’m sorry to hear that both your boys have that mean muscular dystrophy..there is no cure to that.however they do offer treatments to extend their strength’s to walk ect.my husband has Becker’s MD and this is totally different than the DMD.he’s been on steroids when he was first diagnosed,as a teen,and that didn’t work,he was confined to a wheel chair in his early 20′s and his life span is up till around his 60′s,so they say.with DMD however the life span is not to good,with that type of MD is severe and I’m sorry to say that them boys will probably not live till after their early teen years.have you done research on this type of MD?there are many MD clinic’s around the u.s that can give you help,resources,treatments and counseling for this type of MD,your boys will need this as well as you.when i met my husband i was very nervous about the type of MD he had,then we became pregnant with our 2 little girls and i really became worried,we talked to a genetic counselors etc about MD and it still worries me but what else can i do,i can worry myself sick or i can make myself aware of what’s in the future after my husband leaves me and my kids..god has a plan for all of us..most of us we won’t like his plan,but i think its b/c he’s testing us on our faith and strength for what’s going to be coming.i wish you and your boys complete happiness and you try and give those boys a great life and cherish them while they are here.god bless you and your family!