Parent to Parent of Southwest Michigan is a non-profit community organization offering services at no cost to families who have children with disabilities or special needs.


    Undiagnosed and Rare Diagnosis

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    AmyC

    Posts : 2
    Join date : 2010-07-07

    Undiagnosed and Rare Diagnosis

    Post  AmyC on Mon Aug 02, 2010 8:58 am

    Having a child with a rare condition can be very challenging. No one has ever heard of it even many of the doctors. The supports and services offered for the specific condition is very limited to none. Face to face connections often don’t happen unless the specific condition has a foundation that holds a conference. The diagnostic odyssey for many is very long and tedious.

    The diagnostic odyssey continues for those with children who are still undiagnosed. They hope for a diagnosis, maybe one not so rare but will do with even a rare one. They would like something that can help them with a direction. The search for another like your child can be tiring and the doctor’s ready to give up can be frustrating.

    Parents of children with undiagnosed and rare condition can often relate well. Rare knows the challenge of being undiagnosed and undiagnosed knows about many rare conditions through their search.

    Let’s not feel alone in our local community any more share here and let’s see about making some face to face connections.

    AmyC

    Posts : 2
    Join date : 2010-07-07

    Lorna 14 (Undiagnosed also known as Syndrome Without A Name) : )

    Post  AmyC on Mon Aug 02, 2010 9:10 am

    I’m Amy Clugston I have 3 children; Lorna 14, Jadon 9 and Cloey 5 and we live in Otsego.

    My oldest Lorna was born 4lbs 13oz at full term after none complicated pregnancy. She was born with malformed ears, microcephaly and a heart defect. She would feed well and couldn’t keep anything down. We went months and years with finding new issues to deal with developmentally and medically. She has a rather large list of all the details of her condition that you can see at www.undiagnosed-usa.org/lorna.htm. After years of traveling across the country to see doctors and sending blood across the oceans for research she still has no diagnosis or a syndrome without a name.

    I would love to connect locally with others and share my 14 year experience with as well as learn from others experiences as well. amyclugston@undiagnosed-usa.org
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