Which advice would you give to someone who has just been diagnosed with Sandhoff Disease?

See some advice from people with experience in Sandhoff Disease to people who have just been diagnosed with Sandhoff Disease

2 answers

Get connected with the National Tay-Sachs and Allied Diseases Association as soon as possible! And prepare yourself for a very emotional and painful journey.

Posted Feb 24, 2017 by Levi Christopher Lucero, Jr. 2185

Translated from spanish Improve translation

Life is beautiful we all have a time to spend some go before and others after, what really matters is to live and enjoy every second that we breathe there is nothing more wonderful than the love and do everything to make us happy and in the moment of departure, we will feel complete and fulfilled

Posted May 11, 2017 by Mara 700

Sandhoff Disease advice

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Stories of Sandhoff Disease

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HULTÉN'S STORY

Hi! My name is Ludwig and I´m 8 year and I'm from Sweden. I was diagnosed summer 2015. I have bad balance, I fall much, I use to walk but now I use a wheelchair.

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1/5/16, 10:20 AM by Hultén

GENEVIEVE ELISE

My Daughter Gen is 17 months old. She was born 7/2014 and was diagnosed at 8 months old. She showed delayed milestones and poor muscle tone. What we initially got her checked out for was nystagmus, an eye condition. But they wanted to do further ...

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1/5/16, 1:54 PM by Denise

MY DAUGHTER REBECCA

My daughter Rebecca was diagnosed with Sandhoff disease in 2005 when she was 10 months old. Sadly she lost her fight in August 2008, 8 weeks after her baby brother came into the world.

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1/5/16, 10:33 AM by Rebecca

LITTLE ZOE

My daughter Zoe was diagnosed Sandhoff at 12 months and now She is 16 months Old. She is beautiful and We love her so much... Next week We will do g tube to feed her and give meds..I hate this thing, but it is necessary. I hope researchers will find...

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1/5/16, 5:21 PM by Francesca Ambruoso

BECCA'S STORY

My daughter was diagnosed with Sandhoff Disease in April 2013 at 12 months old. She passed away in October 2015 at 3 1/2. Feel free to contact me with any questions in managing this disorder.

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1/11/16, 8:06 PM by Becca

Which advice would you give to someone who has just been diagnosed with Sandhoff Disease?

See some advice from people with experience in Sandhoff Disease to people who have just been diagnosed with Sandhoff Disease

Sandhoff Disease advice

What is the life expectancy of someone with Sandhoff Disease?

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Celebrities with Sandhoff Disease

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Is Sandhoff Disease hereditary?

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Is Sandhoff Disease contagious?

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ICD10 code of Sandhoff Disease and ICD9 code

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Is there any natural treatment for Sandhoff Disease?

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Living with Sandhoff Disease. How to live with Sandhoff Disease?

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Sandhoff Disease diet. Is there a diet which improves the quality of life o...

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