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History of Angelman Syndrome
The History of Angelman Syndrome
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Angelman Network – International Angelman Day 2014
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International Angelman Day Collage
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Sindrome de Angelman Mexico
Con motivo del Día 15 de Febrero, Día Internacional del Síndrome de Angelman, se nos ocurrió hacer la Primera Reunión con Familias Angelman Mexicanas que hemos conocido a través de las Redes sociales y a su vez convocar y buscar nuevos angelitos en toda la República Mexicana, todo esto para tratar de difundir este Síndrome tan poco conocido por acá. Cuando iniciamos solo teníamos conocimiento de 9 familias. Empezamos a difundir y poco a poco aparecieron nuevas familias, por cuestión de distancias se complicaba mucho reunirnos, por lo que decidimos juntarnos solo las familias que estábamos en el centro del País. Ahora ya somos 14 pequeños Angelman en todo México,…
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Interview with Pamela J. Lyman, Author of the book ‘In the Company of Angels’
I was inspired to write ‘In The Company of Angels A Compilation of Stories and Poems on Angleman Syndrome, By Those Who Know it Best’ very shortly after our son Conrad was diagnosed at 15 months.” – Pam Lyman After the diagnosis I hopped on the internet and started searching for information about this diagnosis that had just rocked our world. What I found was minuscule and very scientific and impersonal. I wanted the human story, I needed to be connected with other parents, family members going through what I was going through. I needed to know that I would eventually come out of the dark hole I was in and…
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Dr. Ronald Thibert Answers Your Questions
Dr. Ronald Thibert Answers Your Questions about LGIT? Q We have one question for Dr. Thibert. our daughter started the diet in October 2012 and after about 5 weeks she was seizures free. 3 months later her neurologist decided to lower her medication but because of this her absences came back. When is the best time to start lowering the meds? She is in ketosis and we are really careful that she gets the good ratio. A That is a great question. There is no clear answer but we usually wait 6-12 months before coming off medication after the diet begins – similar to what we would do if we added a…
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Prevalence of Angelman Syndrome
How Common is Angelman Syndrome? The prevalence of Angelman syndrome (AS) can be estimated by using multiple sources of information such as medical practitioner records, hospital registries, laboratory test records and information from schools, public health facilities and developmental institutions. One of the earliest studies came from Denmark where children with the diagnosis of AS, determined from medical clinic records, were compared to an 8-year period having 45,000 births and showed a minimum AS prevalence of about 1/10,000 (Petersen et al., 1995). Another study of school age children, ages 6-13 years, living in Sweden showed an AS prevalence of about 1/12,000 (Steffenburg et al., 1996). Several…
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LGIT Black Chocolate Truffles
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Letter From The Editor March-April 2014 edition
I am so happy to see more and more families become aware of the effectiveness of the Low Glycemic Index Treatment for seizures. We had a great response from people wanting to know more about how it can work for their loved ones with Angelman Syndrome from our segment last month. The Angelman Syndrome Foundation hosted a free online webinar with Dr. Thibert addressing seizures and specifics on the LGIT, which is available on their site. There are many brilliant minds working in labs to create a treatment or cure for Angelman Syndrome and for that, we remain hopeful. Today we must utilize what can help individuals with Angelman Syndrome.…
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Aromatherapy and Angels March-April 2014 edition
This has been quite a crazy winter! We live in Northern New Jersey, have had lots of “indoor” family time due a very harsh winter season. We have all gone from the “Holidays”, right into bad weather and Matthew has had many “snow days” off from school, how I loved those as kid!!! What is best for our Angels and families? Routine, fresh air, eating well, sleeping well & controlling “stress”. This helps us keep our minds, bodies and immune systems working well and helps to protect us from colds and flu. It is important to keep our spirits uplifted, and our bodies and minds balanced. This is how we…
