Tay-Sachs

What is Tay-Sachs? What are the symptoms? How Prevalent is Tay-Sachs?

What is Tay-Sachs?
A rare inherited disorder that progressively destroys neurons and nerve cells in the brain and spinal cord.
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In The Classroom

The teacher needs to be very knowledgeable about the disease in order to know what is happening to the child o The teacher needs to know about any medicine the child is taking to help

What Are The Symptoms?

Appears in infancy around 4 months and then their development slows and muscles used for movement weaken. The infant will lose skills such as turning over, sitting, and crawling and develop an exaggerated startle reaction when loud noises occur. Later on, the child will experience seizures, vision and hearing loss, intellectual disability, and possibly paralysis. Another characteristic is called a cherry-red spot which is an eye abnormality.

with the symptoms of the disease and

when he or she is taking it o The teacher needs to know about the side effects, if there are any, of the medicines the child is taking

The teacher needs to understand the

childs motor and language abilities will not be the same as the rest of the children and some of the activities may need to be modified

The teacher needs to know what to do in an emergency situation with the child, for example if the child is having a seizure or something else happens

How Prevalent is Tay-Sachs?

Tay-Sachs is rare among the general population, but is more common among the Ashkenazi Jewish heritage population. The disease can also be found in French-Canadian communities of Quebec, Cajun populations in Louisiana, and the Old Order Amish community in Pennsylvania.
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due to the disease the teacher needs to

know how to handle it The teacher should understand it is a very emotional time for the family and be sensitive to that

The teacher needs to be very patient

with the child because the child cannot help what is going on and also might not fully understand what is happening to them

I Need More Information

1. http://ghr.nlm.nih.gov/condition/tay-sachs-disease a. This source describes the Tay-Sachs disease and how common it is. The reader can also find information on how it is inherited, what genes Tay-Sachs deals with, and where to find additional information about diagnosing the disease, asking more questions, and other names for the disease. 2. http://www.mayoclinic.org/tay-sachs-disease/ a. This source describes what Tay-Sachs disease is and also talks about how to make the child comfortable once they have been diagnosed. The website also talks about how to make an appointment at the Mayoclinic for tests and information. Lastly, the website has patient stories that people can read to get a more personal insight. 3. http://en.wikipedia.org/wiki/Tay%E2%80%93Sachs_disease a. This source has many different sections about Tay-Sachs disease. It starts by telling the reader what the disease is, its signs and symptoms, and what happens to the genes during Tay-Sachs. The website also talks about prevention, management, and the history of the disease. Lastly, the website tells the reader about research that has been done, along with enzyme replacement therapy and substrate reduction therapy. 4. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002390/ a. This source describes the causes, risk factors, and incidence of Tay-Sachs disease. It also lists the symptoms of the disease and different websites to go to for support groups. The website talks about expectations, complications, and when to call your health care provider about the symptoms. 5. http://www.genome.gov/10001220 a. This source discusses the heredity of Tay-Sachs disease. It also talks about the gene Hex-A which causes Tay-Sachs disease. Lastly, the website informs the reader about the tests that can be done for Tay-Sachs disease. At the bottom of the page are other resources for information on Tay-Sachs disease.

By Missy Doylida

Helpful Organizations
http://www.ntsad.org/index.php/tay-sachs o This section of the website talks about Tay-Sachs disease and what it is. It talks about the three forms, who is at risk, the causes, research being done, and the history of the disease. The website gives the readers many support services to help them get through what is happing to the family, and the support services are not only for immediate family members. Research is being done and a cure is trying to be found which is also discussed on the website. It lists different therapies available, clinical trials being done, and donating both money and tissue for research. Lastly, the website talks about prevention and how to get involved fundraising, attending events, raising awareness, or volunteering to help the organization.

http://www.curetay-sachs.org/ o The website encourages donations to help find a cure and tells about different projects and fundraisers the foundation is doing to raise money. It lets the reader know about research that is being done and provides personal stories to help connect to people who have a child who has been diagnosed. The website provides a brochure for parents and other adults to look at to learn about Tay-Sachs and what the foundation does. Lastly, the foundation tells more about itself and gives other websites with additional information, support groups, and personal stories.

http://kidshealth.org/parent/medical/genetic/tay_sachs.html o This website is for parents so it is put in easier terms to understand, but other professionals can find this website useful as well. The website talks about who is at risk for Tay-Sachs disease, who Warren Tay and Bernard Sachs were, prenatal diagnosis, and the signs and symptoms of the disease. This website also discusses screening couples who are at risk for having a child with Tay-Sachs disease and helping the child once he or she has already been diagnosed.

http://www.marchofdimes.com/baby/birthdefects_taysachs.html o This website is in question and answers form. It talks about the causes of the symptoms shown when a child has Tay-Sachs, and the website going into detail about the other forms of TaySachs disease besides the most common one seen infants. The website discusses who is at risk for Tay-Sachs disease, how the disease is transmitted, and if there is any treatment for it. The website talks about how people can find out if they are carriers and how to be diagnosed before the birth of the baby. Lastly, the organization, March Of Dimes, gives more information about itself and how it supports research on Tay-Sachs disease.

http://www.rarediseases.org/ o This website discusses rare diseases in general, which includes Tay-Sachs disease. It talks about the symptoms and other organizations related to Tay-Sachs disease. The website also tells the reader how to live with a rare disease and gives him or her other tools and resources to use to get medical help, support, or additional information. The website also has different sections for medical professionals, for industry, for patient organizations, and then for patients and families. Each section is broken down into different parts that focus on information needed specifically for each organization. For patients and families there are centers to go to, information about clinical trials, and both patient and researcher stories to read.

By Missy Doylida