PATRICIA USES MYSPACE TO RAISE AWARENESS FOR RARE DISEASE

http://www.myspace.com/patriciamastoandeds
BBNB PROUDLY SUPPORTS PATRICIA & HER SONG DUSTIN IN RAISING AWARENESS FOR THESE RARE CONDITIONS.
Patricia, who has been nearly bed-ridden for three years and cut off from the rest of the world by a series of major heath issues, is using MySpace to raise awareness about two rare diseases.

Patricia has two rare and often misdiagnosed diseases that don't allow her to work or drive.

But she has managed to find a way to reach people in the outside world; the homebound woman is using the Internet to reach out and raise awareness about her diseases.

Patricia has Ehlers Danlos Syndrome, a disease that breaks down collagen; she also suffers from Mast Cell Disease, which makes her have potentially fatal allergic reactions. As a result, Murray can't be around Latex, perfumes or even light.

Her doctor agrees such cases are extremely frustrating. Dr. Opal Alpan said, "Current medicine doesn't have either answers or medications" for her situation. In fact, he says, there is no cure for her.

But Patricia isn't giving up; she is fighting back with music. Murray invited artists to become friends on her MySpace page, where she posted information about her diseases. Murray says she has singers from Australia, Asia and Pakistan, and that they know about Mast Cell Disease and Ehlers Danlos because of her.

Patricia is so adamant about raising awareness for the diseases that she held a contest online and awarded the winner $20,000 of her own money.

Despite a life of chronic pain and endless medication, Patricia says she is happy about getting the word out with the help of singers in cyberspace.

Patricia's son Dustin also has Ehlers Danlos Syndrome, which is genetic. He is hoping to to stage a concert in the D.C.-area this fall with some of her contest winners.

Adapted from the TV interview.

Category:

News & Politics

Tags:

• myspace
• patricia
• raise
• awareness
• rare
• disease
• TV
• interview
• contest
• singers
• news
• outreach
• bernie
• mac
• alicia
• keys
• musicians
• john
• edwards
• beyonce
• christopher
• reeves
• elton

[RareDiseaseContest]

thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit Remedymd.com/RareDiseaseContes­t. Good luck

[RareDiseaseContest]

Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit Remedymd.com/RareDiseaseContes­t. Good luck!

[SuperJosie1975]

Hi , i hope you are ok . I understand as I ahve a mast cell activation syndrome . I don't know which doctors you are seeing but there are some amazing masto docs in the US . I know of others with ethlers danlos so they may have advice for you too . Please email me if you wish to be in more contact xxxxxx

[cuckooclockman]

Good on you Patricia! I have Indolent Systemic Mastocytosis and very much admire you. All the best from Down Under!

[Poetessa2]

I am so proud of you!!! I have Systemic Mastocytosis and know how horrible it can be!! I too use the internet to get awareness out there and use my art as a filmmaker, spoken word performer and actress to get the word out there as well!! I'll be launching my CD's too!

My prayers are with you my friend, there are so few of us out there who truly understand what it's like to live with a rare illness with no cure. Just know that I am here and I understand! Bless you for all you do!! Healing Hugs!!!

[verticalsmurf]

Contact her! Find support groups on-line! You and your 4yo deserve all the support you can find.

[marthamoreno6628]

You are a very brave woman my 4yr old has EDS i wish i had friends that can talk and comfort me

[lindaatje2000]

Deep respect for this powerful woman

[Riverbear1]

Hi Patricia, great to SEE you at last, you are a brave, strong and talented lady. We wish you all the very best for your awarness campain.

JoX

[stuartgriffin]

It is impressive what Patricia is doing despite her ill health. Thanks to Divagab for continuing to bring Patrica and her efforts to people's attention.