Saturday, February 14, 2009

Tuberous Sclerosis Support

One of the frustrating points about TS, for me...believe me there are many but this is just one....is that there is no support or connection to other families here in our fine city, that are living with TS. Are we really the one in a million family with TS? The stats say that 1 in between 6000-17000 (depending upon severity) are affected by TS so doesn't this mean that there are at least 58 other families with TS walking among this community? Why is there no connection?

I expressed our interest to connect with other families with a small child who has TS. And now that possibility may come. Our Neuro nurse contacted me on Friday about a new diagnosis for a 13 mth old little girl. My heart breaks for her and her family. If we can be of assistance in any small way I am absolutely game and hope that the social work team will work with us in making this happen. To help her parents through their fear and anger and sadness and questions and how to maneuver the system. When Bup was first diagnosed, this would have been so helpful for B & I. I only hope that we can give another family an ounce of comfort.

And maybe this is the beginning of something bigger. Awareness and support on a larger scale for more people here. Maybe the TS organization can become more prevalent and awareness of TS will grow within our town. One can only hope.

2 comments:

  1. Well my dear friend, I think you've gotten this ball rolling. By making it known that you'd like to connect with other families, the nurse has contacted you and I think the idea will spread.

    When Thing One was diagnosed with his severe speech and was being tested for PDD-autism we didn't have much support - in the beginning. Because he wasn't diagnosed there were support groups that we couldn't access so instead I turned to the online world and found a ton of blogger friends in the same boat. But after attending a seminar at Providence I found out about Family Services for Children with Disabilities and they were able to point me in the right direction. Through them there was in-home support, support groups, and a ton of information.

    I wish you well with this venture! I'm sure the mother of the 13 month old would love to meet someone who's also been there.

    You're simply Mahhhhhhvelous!!!

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  2. It's strange to think that you are alone in this, in a city this size. I'm sure your efforts will pay off in great support for your family and the other families that you are going to come into contact with.

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