WALK BY FAITH on Instagram: "Children with Sanfilippo Syndrome often have coarse facial features due to the buildup of GAGs from the lack of a missing enzyme needed to break them down. Coarse features look like: Thick dark eyebrows Large head circumference Full lips Low nasal bridge Gapped teeth Protruding belly Thick skin Thick, coarse hair A lot of HAIR 👏🏻 & more #sanfilipposyndrome"
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WALK BY FAITH on Instagram: "Children with Sanfilippo Syndro…
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Instagramwa.lkbyfaith
Sanfilippo Syndrome has taken her ability to talk, to walk and run, to eat by mouth, to swing and to be a "typical," and healthy child with a beautiful future ahead of her. It has brought on seizures, movement disorders, dystonia, myoclonus, vision and hearing impairment, the need for a feeding tube, damage to her respiratory system, sundowning, days without sleep, neurological storms, muscle contractures, muscle deterioration, organ damage, nerve damage, cellular damage and so, so much | Haidyn
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Today is World Sanfilippo Awareness Day. Will you share their story today and help us get closer to a cure? Sanfilippo Syndrome is a rare neurodegenerative genetic disease. Symptoms include respiratory issues at birth, developmental delays, autism features, dementia, brain atrophy, seizures, hyperactivity, and loss of the ability to walk and eat. All these girls have Sanfilippo type A, but the disease varies greatly. Some have issues with food allergies or aversions, while others don’t. Some hav
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Sanfilippo is a progressive, neuro-degenerative, metabolic disorder. Metabolism consists of a set of life-sustaining chemical reactions that are constantly occurring in all of our cells. Many of these reactions rely on enzymes to break down and process the substances our bodies use to stay healthy – like sugars, proteins, vitamins, and fats. With SF, the body does not have enough of the necessary enzymes to break down a cellular sugar called “heparan sulfate.” It is important that heparan sulfat
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𝐖𝐡𝐚𝐭 𝐢𝐬 𝐒𝐚𝐧𝐟𝐢𝐥𝐢𝐩𝐩𝐨 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞? ⠀ We get this question at least a couple of times a day. Here’s som…
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