Community Chat

[Vamp]

October is famously the breast cancer awareness month with pink-ribboned items all over the place. Don't get me wrong, I support breast cancer research and awareness (my sister is battling the disease right now), but is there really anyone in this country who isn't aware of breast cancer?

How about learning five fact about the little known condition CDKL5? One of my friend's daughters suffers from CDKL5, so I thought I'd share.

1) CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment.

2) The majority of children affected by CDKL5 are female; however, it can affect males as well.

3) Most children with CDKL5 cannot walk, talk or feed themselves, and may are confined to a wheelchair, dependent on others for everything. May also suffer with scoliosis, visual impairment, sensory issues and gastrointestinal difficulties.

4) Because it is a rare and severe disorder and the onset is early, there are no celebrities that have it--so it doesn't get much press and it doesn't get much funding.

5) There is no known cause and there is currently no cure for CDKL5.

If you'd like to know more, check out cdkl5.com. It is the 5 year anniversary of the International Foundation for CDKL5 Research and their hope is that everyone learn 5 facts, give $5, and share with 5 people.

Thanks for taking the time to learn a little something today.

Peace & Love, Vamp

[Vamp]

Fact # 3) ""many"" not ""may"". I need another cup of coffee and better proofreading skills

[Preds]

Blessing to this precious child and her family. Thank you for the heads up about it.

Never proof before your second, or third cup.

[Vamp]

Thanks, Preds! You are so right about the coffee!

[Mj12]

Thank you so much, Vamp. Sadly I was totally unaware of this disease but thanks to you - not anymore. Glyn's Gift on the website is so powerful.

(best wishes and said a prayer for your friend's daughter).

[reese2]

I was also completely unaware of this disease, Vamp. Thanks to you, that's no longer true!

[Vamp]

Thank you, Preds, MJ 12 and reese2. It means a lot to me that you took the time to look at this post, and your prayers & positive thoughts are appreciated.

[Puzzle Piece]

Thanks for the info, I didn't know about this disorder.

[Preds]

On 10/10/2014 Vamp said:

Thank you, Preds, MJ 12 and reese2. It means a lot to me that you took the time to look at this post, and your prayers & positive thoughts are appreciated.

See, there is a good side to VP. We learn so much from others and hopefully makes us richer.

[kdgn]

Thank you Vamp. I wasn't aware of this childhood condition either-