Dear friend and brother:

We found out that Hadas has DMD when he was 3 now he is 4.

We give him steriods (15mg) he is 20 kg and also vitamin D and calcium. We are thinking very much to give him blood preasure medicine as well.

Please visit action duchenne conference to hear more about it. Follow this link:

 

http://www.actionduchenne.org/r-nav/484.jsp

 

 

Let me know if you have any problems to hear and view the presentations

 

Yours,

Nimi

Dear Mehboob, dear friend:

Thank you for your email and interest. As you know my son has DMD and I understand yours have BMD what mutation?.

Israel is not advanced in DMD and BMD research though I hope that with regulation change and the support of reasearh in Orphan disease we will start to make some progress.

I really hope that things will move along faster but they are moving thanks to organizations and parents.

 

I'll be in touch

Best regards to you and your family take care

Sallam,I don't promess nothing but I did talk to somebody about his electric wheel chair,he told me he'll contact the company first,then if they agree to get him another one,because,he's in title to get a new one,then he'll give me his, wich is in a good condition.
Any way I'll keep you posted.I'll do my best.
Give my salutation to all your family.

Sallam,I'm sorry to be late to reply to your message.I hope everything is good with you,specially your son.For the moment I don't have any wheel chair,but if I find one I'll contact right away.My best for you,koulaam oua antoum bikhair.
Sallam.

Hi,
Please check if Prednisone is available( If DEFZLACORT is not there).Both are steroid only. Also,give some calcium/VIT D syrup. Both of these medicines give some strength to muscles and bones and delay the weakness. As such, these are the medicines which are given in USA/Europe also.
But please note that there are side effects also.So please check with your doctor.
Acoording to me, as your kid is 17 years, you should also give some heart medicine.

Take care.
Raktim

Hi,
We are giving Steroid( DEFZLACORT) + Shelcal(Calcium and Vit D Syrup) +Becasule( Multi-vitamin syrup) and Vitcofal(Iron syrup). Apart from that we do physiotherapy and good diet.

As such I had heard of certain doctors in Delhi,Bangalore and Mumbai who are giving stem cell treatment (Mesenchymal Stem cell) to DMD boys. I am still not totally
convinced about the results.
I normally see one Doctor in Chennai( Dr V Vishwanath). He has founded MDA India group ( www.mdaindia.org).
Apart from that I know 1 doctor in Mumbai and Delhi (Dr IC Verma in Sir Ganga Ram Hospital, DELHI)who are working for DMD.

I hope something good will come out in near future(one to one half years).

MAY GOD BLESS YOUR FAMILY.

Hi,
As such there are mainly 4 type of research is going on.
(1) Exon skipping. Here AVI BioPharma and Prosensa (along with Glaxo) is working.
(2) Myostin inhibitor. Here Acceleron is working with ACE-031. Thsi will help all boys.
(3) Utrophin upregulation. Here Biglacyan is working.
(4) PTC is working for point mutation with PTC-124.
Apart from that certain stem cell trials are planned in Italy.
Also, Dr Mendal in US is planning gene thereapy.

Raktim

Hi,
I will send the details on Monday.
Raktim

Slaam,in the US the only FDA approved steroid is Prednisone.I get my son's steroid from England called Deflazacort,with less side effects than Pred.