Music and hemophilia

Good Vibrations, Blood Vibrations!

Kudos to some young people with hemophilia with great ideas. Billy Conde Goldman and Matt Tache have recently announced “Blood Vibrations.”  This is an ongoing music project created by people in the bleeding disorders community.

In their own words: “The goal of the project is to provide a forum for creativity, expression and sharing. Anyone with a bleeding disorder (boys and girls, men and women) is welcomed to participate.  We encourage collaborations and group works. Proceeds from the project will be donated to the bleeding disorders community.  Pay it forward.”

They write that this project is run and funded by the community, for the community.  There is no affiliation with or funding from any private or public organization or company.

Aspiring musicians with bleeding disorders, Billy and Matt look forward to your involvement!

Direct any and all inquiries to Billy Conde Goldman or Matt Tache at
And check out their website at

One good things about music, when it hits you, you feel no pain. Bob Marley

Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness. Maya Angelou

The “Bloody” Ring Tone

I’ve rediscovered ring tones. It happened last weekend at Kerry Fatula’s. She’s a fellow mom of a child with hemophilia. While chatting in the kitchen we heard a ring tone and everyone went silent, wondering whose cell phone it was. It was the dinosaur in “Jurassic Park III” (on TV), you know, the one who swallowed the cell phone and then… well, if you know the movie you will know the outcome. We all acknowledged that has to be the most famous ring tone in history.

Kerry and I thought it would be funny if she and I had our own ring tone. I’ve been using the odd little pings and rings provided by Apple, which are kind of lame. When I use them, I can hear a distinctive noise come on and know immediately who I do not want to answer. (Kerry is not one of those.)

So I though it would be fun if I selected ring tones for hemophilia situations. I logged on to iTunes and typed in “bleed.” Popular name for songs, apparently.

“Bleed“–Anna Nalick, Col, Puddle of Mud, Action Action, Angel Dust, Blitz, Collective Soul, Dear Leader, The Fade, Fat Jon and Styrofoam, Gary Numan, Floatsam and Jetsam, Further Seems Forever, Godhead, Ill Repute, Intuition, Joel Rush, Justin Manning, Matter, Michael Lord, NLX, No Man, Neil Zaza, Oxymoron, Shiloh, Sinch, Seize the Day, Scar’d Sanity, Sentenced, Smoke of Oldum, Soulfly, Vixen, Wumpscut. I am not making up these band names. I couldn’t be that creative.

There’s something for everyone, which is good because many of the songs are heavy metal and the lyrics aren’t so nice–apparently when they say “bleed” they are not referring to their own blood. But if these don’t strike your fancy, try these:

“Bleed it Out” –by Linkin Park
This is what happens when you don’t infuse fast enough.

“Bleed Alone”–Haste the Day
A good ring tone for all the single guys with hemophilia.

“Bleed and Blister”–Moneen
A ring tone for when you wear shoes that are too big.

“Bleed Black”–AFI
A ring tone for when you have an upper GI bleed?

“Bleed Forever”–Super Furry Animals
A ring tone for while we wait for a cure.

“Bleed from Within”— The Music
A ring tone for those prone to joint bleeds.

“Bleed Me an Ocean”— Acid Bath
A ring tone for when you forget your factor.

“Bleed Together”— Lovedrug
A ring tone for hemophilia camp!

“Bleed, Everyone’s Doing It”— Spill Canvas
Could be the ring tone theme song for all with hemophilia?

“Born to Bleed”— Dirty Sweet
A ring tone for those who inherited their hemophilia.

“Brother Bleed Brother”— Finch
A ring tone for your sibling.

“Let it Bleed”— The Rolling Stones
Not good advice, but you can’t get it in a ring tone anyway.

“Let it Bleed Again”— God or Julie
Still not good advice, which we don’t want to be reminded of in a ring tone.

“As I Bleed“– Bipolar
A ring tone for an infusion.

“Please Bleed”— Ben Harper and the Innocents
A ring tone for when you want to stay home from school.

“Punch Me I Bleed”— Children of Bodom
A ring tone for those who don’t have lifetime caps.

“Bloody Nose”— Earlimart
A ring tone for when you say the above to someone.

“Bleeding”— Ignite, Prom Kings, Todd Rundgren, Sixpence None the Richer, Five Finger Death Punch, Delerium, Sprung Monkey, Tiger Lillies [very weird], One King Down, Jacksom Rohm, Venom, Raindancer, Cord, Raunchy
A ring tone for when you first get diagnosed.

“Done Bleeding”— Sebastian Bach
A ring tone for those on prophy?

“Bloody Reunion”— Molly Hatchet
At last, a ring tone theme song for NHF meetings

“Through His Blood”— Bloody Sunday
A ring tone for grandchildren of those with hemophilia

“Only Women Bleed”— Alice Cooper
A ring tone for those, of course, who have VWD

“Bleeding”— F5
A ring tone for those with Owren’s disease (factor V deficiency)?

And my favorite… “You’re Bleeding” by NOFX, as in no factor X?

And what would I choose as a mother of someone with hemophilia? How about Slipknot? Yes, Slipknot. Those weird, carnival-faced, mutant KISS-like boys who like to scream. The song?

“Wait and Bleed.” Yikes.

Great Book I am Reading: Blood: An Epic History of Medicine and Commerce, by Douglas Starr. This book should be mandatory reading for anyone involved in the hemophilia community. I don’t know why I have waited this long to read it. Starr reveals the history of blood, as a source of fear and magical beliefs, and eventually blood as a commodity. In the latter half, the book focuses intensely on our community and the contamination of 10,000 of our own. At 400+ pages I will be reading this for a while, but it is already four stars out of four.

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