Which advice would you give to someone who has just been diagnosed with Nemaline Myopathy?

Advice for the newly diagnosed with Nemaline Myopathy, written by people who have lived it. What they wish they had known on day one.

3 answers

Make sure you get the help you need. Regularly go to the doctors to ensure there are no problems with your spine/heart/lungs. Partake in physiotherapy/hydrotherapy as much as possible.

Posted Feb 24, 2017 by Star 1270

Be aggressive with taking care of the Respitory system. Push for what you feel is necessary for the patient. Never give up just keep living and fighting!

Posted Aug 29, 2017 by Mary Jo Draisma 2100

Translated from portuguese Improve translation

do not lose hope never, will one day find a cure

Posted May 29, 2017 by Danielle 1150

Nemaline Myopathy advice

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NEEDLE IN A HAYSTACK

Doctors had never seen a person with this disease before me. They said it was very rare. Eventually I found others online and we are a like family. The nemaline myopathy support group on Facebook is a great resource community.

659

8/29/17, 9:09 AM by Greybeard

OUR FOURTH DAUGHTER BORN STARTED TO FAIL AT ABOUT TWO WEAKS THAT WE NOTICED. FIRST WEIGHT LOSS THEN JUST PHYSICALLY WEAKER BY THE MINUTE. UNABLE TO SUCK SWALLOW AND BREATH. THROUGH TESTING AND DIAGNOSIS WE HAVE LEARNED SHE HAS A NEW MUTATION. MUSCLE BIOP

Same as above

644

8/29/17, 12:33 AM by Mary Jo Draisma

IT'S BEEN A LONG ROAD

I was born with the condition Nemaline Myopathy & have always had muscle weakness, but I wasn't diagnosed with it until I was 43. I suffer from Ehlers Danlos Syndrome and in my long trail of searching for help and answers for that condition I ended u...

556

8/29/17, 9:16 AM by Peter

NEMALINE MYOPATHY

ACTA1 ;mild to severe side; NIV/night, Gtube, spinal curvature >70, surgery never done/considered too risky by local surgs Complicated labor-ischemic hypoxia autistic, failure to thrive used to walk 2 to 5 years declining :(

554

8/29/17, 1:32 AM by Laura

OUR STORY

Our journey started in 2010 with our first born son and also first born nmer he passed away at 12 days old then our second born son in 2011 also born with nm he passed away at 12 weeks and in 2016 our third born son was also born with nm and its been...

485

8/30/17, 5:27 PM by Laura

Which advice would you give to someone who has just been diagnosed with Nemaline Myopathy?

Advice for the newly diagnosed with Nemaline Myopathy, written by people who have lived it. What they wish they had known on day one.

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