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Welcome to the Beerys Dystonia Support Community

This community is for people and families that want to share their stories, help each other, ask questions and provide answers.
Sunday, February 05, 2012
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  • December 07

  • Bobm Dear Joe and Reeta Beery, First, Thank you for setting up this community page. My story deals with wanting to have my genome mapped with hopes that a genetic researcher will want to follw the results. I am Robert Miller a person disabled with Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) for 25 years. I have just stumbled upon an Alumni Newsletter from Yale that discussed Jonathan Rothberg and the PGM. Last night I started a letter to Jonathan and his wife regarding his Gene Machine and the fact he had worked with Ian Lipkin on finding the recent E. Coli outbreak. Ian Lipkin is about to begin looking at viral arrays of patients with CFS. I was contacting Jonathan to request if he would become involved with genetic research on CFS and FMS. Yesterday at 3:55 pm I saw your story regarding your twin children and how using gene sequencing you were able to help them, I tried to call Joe, but he had left the office, so I left a voice message on the assistants message machine. I was hoping to get a call today, but that has not happened. This can not be by chance that I found these stories within a day of one another. I have twin sons now 11 years old, Alex and Daniel. I thought the medical establishment would have discovered the cause of my illness by now or I would never have married. I spend little time with my sons due to this illness. I am asking you for your help as a mother and father wife and husband. I wish to become a useful person once again. There is not doubt that I have defective genes. My family history is overwhelming with cancer, the majority of my maternal family have all died cancer related deaths. My sisters that were identical twins, mother, brother, 3 maternal Aunts, 3 maternal Uncles and 2 maternal cousins all died cancer related deaths. The cancers were 2-Wilms tumors, an Undifferentiated germ cell, 2-Renal cell, 2-cholangio-carcinoma, pancreatic, Prostate, Lung, Stomach and Esophageal. My inability to produce NKC that function
    about 2 months ago

  • Bobm has joinedGeneral Information
    about 2 months ago

  • November 20

  • JacobsMom General Information Hi everyone. Our story may be a little different from most but here goes..while pregnant with our first child, drs found that I had a large pituitary tumour pressing on my optic nerve. This was during the third trimester of pregnancy and I was given Bromocryptine. The drug lowered my prolactin and shrunk the tumour but I also had a placental abruption shortly after taking it. After the abruption, the baby stopped growing (intrauterine growth restriction) for the last two months. When born he had NO fat at all on his body. He had colic, uti, and did not sleep for more than 1/2 hrs until he was at least 8 months old. He was slow with all milestones and was given an autism spectrum diagnosis just before his 5th bday. He has since been diagnosed with Tourette's, adhd and PANDAS/PITAND. I want to know if the drug/pregnancy created these issues or if it is something else. He has tested homozygous for MTHFR 677T and now I want to know everything I can about any gene that may be causing his delays. He has movements problems as well as motor planning issues and memory problems. He is a friendly kid but highly impulsive and hyperactive. He is small for his age and very skinny. I am going to be contacting the Bayer College for information on the genome sequencing test for him so that we can finally get some answers.
    about 3 months ago

  • JacobsMom has joinedGeneral Information
    about 3 months ago

  • August 06

  • Maria has joinedAlcohol-responsive myoclonic dystonia and General Information
    about 7 months ago

  • June 17

  • Santiago has joinedGeneral Information
    about 8 months ago

  • June 16

  • kelley hello - im a mom of 2 beautiful baby boys (10 weeks old) Baby A has been diag w/ Tyrosine Hydroxylase-his bedy does not make dopamine. Its been a rough 10 weeks. I read your artical in the Houston Chronical and it has given me alot of hope.
    about 8 months ago

  • kelley has joinedDopa-responsive dystonia
    about 8 months ago

  • Michelle Hello. How amazing it is that I stumbled upon the article about your Alexix Beery. My son was born with major fetal distress. As the story goes, he was eventually diagnosed with CP. He has a great physical rehab physician who prescribed him with Carbadopa-Levadopa (sp). It really changed things for him. I am so excited to find you!!! I can't wait to get some of those books. Could you tell me where you got the genome testing done. Thank you!!! Michelle
    about 8 months ago

  • Michelle has joinedGeneral Information
    about 8 months ago

  • June 15

  • kelley has joinedGeneral Information
    about 8 months ago

  • May 27

  • Alketa has joinedGeneral Information
    about 9 months ago

  • May 21

  • Angela Wachtmann has joinedGeneral Information
    about 9 months ago

  • March 16

  • Retta Beery For a special screening of the documentary "Changing Keys: Billy McLaughlin & The Mystery of Dystonia". Followed by an informal sharing and discussion session. Saturday, March 19th in San Diego at 1 pm.Persons with any form of dystonia, family members, friends and others are invited to attend. We are encouraging musicians who have dystonia or who might be dealing with coordination or performance issues to come and share in the discussion. Light refreshments will be provided.Please RSVP, if possible: Martha Murphy at tmmurphy@juno.com or 619-582-1961 Support Group web: www.dystoniaofsandiego.com
    about 11 months ago

  • December 07

  • Revelle has joinedGeneral Information
    a year ago