Heller's Syndrome
What is Heller's Syndrome?
Heller's Syndrome is an extreme disorder that resembles autism. It is a disintegrative disorder that sets back the child's intelligence and social abilities.
A normal child are suddenly set back after 2 to 10 years with almost normal behavior. The child may also be well functioning but with light handicaps.
Heller's Syndrome is a part of the Autistic Spectrum.
A normal child are suddenly set back after 2 to 10 years with almost normal behavior. The child may also be well functioning but with light handicaps.
Heller's Syndrome is a part of the Autistic Spectrum.
Last updated 12 Jul 2011, 04:26 AM
12 Jul 2011, 04:26 AM
Dear Witches, If you ask for a miracle cure for Heller's Syndrome, you will be sadly disappointed. My son Lukas was hit in 2005. He lost his active language in 2006 and in 2008 we had to put Lukas in an institution for severely handicapped children. I am with Lukas 3-4 times a week. He understand all what we say to him, but he never answers. His wonderful voice was lost too - Lukas won three singing awards in the special school, before Heller's Syndrome. Now, Lukas do not progress at all. He is happy, jumps and yells and love to eat (he can eat huge meals and still be slender as a feather). To conclude: A person with Heller's Syndrome will certainly NOT be walking in the street. We are forever in the world of the institution. Best regards Henrik Gade
6 Nov 2010, 09:57 PM
I have been trying to understand some things about Heller's in particular, but would also love to hear from anyone that knows anything about the research being done into this, or Rett's, Williams, childhood disintegrative disorder, or even schizophrenia right now. What I am specifically trying to find is if there is a record anywhere of someone never being diagnosed with one of these syndromes, waking around their whole life not knowing what they were doing and no one else ever knowing it because no one got hurt or harmed seriously ever, and then that person figured out themselves the spectrum disorder key and how it fit into the whole thing and was still alive and could explain the science and medicine behind it all. From the things I've read, I've not found a full recovery anywhere, but I also read that they expect to be able to understand some of these things in ten years or so if they're lucky. I have reason to believe I know someone this has happened to and got into the research on their behalf and found some other people to help me, but we have not been able to find anyone with enough knowledge about what is going on in the research area to figure the rest of this out and what to do now. Any suggestion anyone can make will be most appreciated. Thank you!
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
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- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Autism and Heller's Research
Created by Witches | Last updated 12 Jul 2011, 04:26 AM
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