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Hi everyone

Hi everyone. I live in Bangkok in Thailand. My son is 5 years and 7 months with DMD. I am shocked and can't accept what doctor said. There is no cure but still i have hope that there will be any medicines or treatments to control this disease soon as soon posible. Nowadays I feed him Thai natural medicines which is made from herbs. Thai natural doctor told me after have medicine for 4 months. I have to give my son to check up for CPK by blood testing. May have some CPK decrease. He has had medicine for 2 weeks. I hope this herbs will work and can control disease. But I still follow research which is related to DMD disease. I came to this site and want to exchange any information with everyone. Thank you to everyone for fighting together.

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Permalink Reply by Lori Ware on May 2, 2016 at 9:18am

Hi Vanita and welcome to the site. There is also a HUGE facebook community that is very active if you would like to join us there. Your doctor is correct that there is currently no cure. But there are alot of things in the works that may help. I am sure your supplements are helping but know that his CPK fluctuates based on how active your son it. So, one day it could be very high and a few days later it could be low. It is really not an indication that the duchenne is being controlled. Do you know your son's mutation? Has he had a DNA test? Good luck to you and your sweet boy! Lori Ware, Louisiana, USA

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Permalink Reply by Vanita on May 2, 2016 at 10:24am

I just knew that he has this disease last 2 weeks. He had given blood to do a DNA test but It is still in processing. I will get the result after 1 month. Thank you for your information.

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Permalink Reply by Lori Ware on May 2, 2016 at 11:09am

good. There are several mutation specific drugs that could help and one going to trial in the US and UK that will be good for all boys. The trial and approval process is LONG and stressful, but....better than nothing! Ask anything and there are many of us willing to help!

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Permalink Reply by Vanita on May 2, 2016 at 12:38pm

Is that translarna???

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Permalink Reply by Lori Ware on May 2, 2016 at 1:35pm

Translarna is if your son has a non-sense mutation or a stop code. Utrophin, C1100 by the company Summitt PLC out of the UK is the one for all boys. Sarepta has the Exon skipping for Exon 51 that may be approved by the FDA this month. There is a website called http://www.skipahead.com that can show you what Exon's he will need to have skipped in order to help him.