topic Re: Awareness in Community Chat

Awareness

Vamp — Fri, 10 Oct 2014 15:15:12 GMT

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

Re: Awareness

Vamp — Fri, 10 Oct 2014 15:17:03 GMT

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

Re: Awareness

Preds — Fri, 10 Oct 2014 15:19:14 GMT

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

Never proof before your second, or third cup.

Re: Awareness

Vamp — Fri, 10 Oct 2014 15:27:35 GMT

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

Re: Awareness

Mj12 — Fri, 10 Oct 2014 15:40:29 GMT

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).

Re: Awareness

reese2 — Fri, 10 Oct 2014 15:42:56 GMT

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

Re: Awareness

Vamp — Fri, 10 Oct 2014 15:44:51 GMT

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.

Re: Awareness

Puzzle Piece — Fri, 10 Oct 2014 16:03:58 GMT

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

Re: Awareness

Preds — Fri, 10 Oct 2014 16:06:24 GMT

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.

Re: Awareness

kdgn — Fri, 10 Oct 2014 16:24:18 GMT

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

Re: Awareness

scotttie — Fri, 10 Oct 2014 16:28:41 GMT

Great post, Vamp. So many orphan diseases.

Re: Awareness

reese2 — Fri, 10 Oct 2014 16:31:49 GMT

On 10/10/2014 Preds said:
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.

Vamp, you're very welcome and thank you!

Preds, that's the truth!

Re: Awareness

Vamp — Fri, 10 Oct 2014 17:14:46 GMT

On 10/10/2014 Preds said:
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.

Yes, there is, and every person who has taken the time to read this and respond is greatly appreciated. I truly believe it is people like you who can make a difference! And if you are so inclined, go to the website and find out how you can help.

Re: Awareness

Jazzybelle — Fri, 10 Oct 2014 18:27:53 GMT

I think it is possible to bring awareness to other diseases/conditions without taking attention away from breast cancer or any other disease/condition.

I do think that breast cancer has garnered so much attention because it affects so many women. Most of us have been affected personally by having experienced breast cancer ourselves or having someone we love affected by it. I lost my sister (2012 - age 49) and my mother (2013 - age 83) to breast cancer so I can't help but be attuned to that particular disease. That does not mean I am not sensitive to other less common illnesses, and I appreciate being made aware of other areas in which we might want to focus some of our concern and attention.

CDKL5 is a genetic disorder; and, while breast cancer can be genetic, it is most often not. Our western lifestyle is often a contributing factor to breast cancer as well as other cancers, diseases and illnesses.

Vamp, prayers and best wishes for your friend's daughter and your friend.

Re: Awareness

croemer — Fri, 10 Oct 2014 18:32:52 GMT

Vamp I hope your sister does well. TY for the education.

Re: Awareness

voyager1980 — Fri, 10 Oct 2014 19:50:15 GMT

Prayers for your friend's daughter Vamp.

Thank you for making us aware & informed.

Re: Awareness

Vamp — Sat, 11 Oct 2014 02:57:40 GMT

Thank you, jazzybelle, croemer, and voyager1980 for your kind words, positive thoughts and prayers.

I am so sorry about your sister and mother, jazzybelle. I don't mean to take anything away from breast cancer awareness, and it certainly does affect more lives than CDKL5, a relatively rare disorder, which is one reason it gets so little attention.

We are very hopeful about my sister. They caught it early, and although she still had to go through a lumpectomy, chemo and now radiation, her prognosis is very good. Nevertheless, I wouldn't wish that journey on anyone and look forward to the day when a cure is in sight for all cancer patients.

My friend's daughter with CDKL5 is a very beautiful 12-year-old who suffers from at least two seizures daily and functions intellectually at about an 18-month-old level...Sadly, this is considered high functioning for CDKL5 and she is doing much better than others. The family is connected with other parents in the CDKL5 community, and they have lost three little girls in recent weeks, so it's been really hard on everyone.

I am grateful for all of you who have taken the time to educate yourselves a little bit about this condition. My hope is that someday these children, too, will have a cure in sight or at the very least more understanding of their condition so they can lead more comfortable lives. They have so little now.

Blessings to all of you and enjoy this beautiful fall weekend.

Vamp

Re: Awareness

newziesuzie — Sat, 11 Oct 2014 03:14:06 GMT

Thank you for raising awareness. I pray for everyone with health problems and I think education and awareness is needed. Sometimes research for one disease helps those with other diseases too.

Re: Awareness

Lila Belle — Sat, 11 Oct 2014 16:01:19 GMT

Good luck to your sister and the little girl, Vamp.

Re: Awareness

Vamp — Sat, 11 Oct 2014 17:30:17 GMT

Thank you, newziesuzie and Lila Belle!