Community Chat

[scotttie]

Great post, Vamp. So many orphan diseases.

[reese2]

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!

[Vamp]

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.

[Jazzybelle]

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.

[croemer]

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

[voyager1980]

Prayers for your friend's daughter Vamp.

Thank you for making us aware & informed.

[Vamp]

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

[newziesuzie]

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.

[Lila Belle]

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

[Vamp]

Thank you, newziesuzie and Lila Belle!