National Hemophilia Foundation Giving Back 1

Xtra Xtra

TURNING ANGER INTO ADVOCACY

A Conversation with PATRICK MCMULLAN

Patrick McMullan by Sarah Aldridge

January 2011

When Patrick McMullan looks through his camera lens, he sees society people, fashion models and celebrities—the backbone of his business as a nightlife photographer in New York City. But there’s one image he’ll never capture again—that of his sister Doreen. She died of complications of a gastrointestinal bleed in 1979, a year before Patrick opened his photo agency. Doreen was 25 and Patrick was 23.

Doreen was not diagnosed with von Willebrand disease until she was in nursing school in her late teens. By then, says her family, she was so accustomed to bleeding that she might have missed the symptoms of the severe bleed that killed her. At the time, she was not under the care of a hematologist. “When she died because of something that could have been avoided, that hit me hard,” says Patrick, 55. Doreen not only left grieving parents and siblings, but also a husband and son. “I don’t want to see anyone else suffer or not be diagnosed for something that is treatable,” Patrick says.

Patrick is turning his anger into advocacy, working with the National Hemophilia Foundation’s (NHF’s) new Victory For Women initiative. He is donating his time and talents to photograph the faces of women with bleeding disorders for a 2011 calendar, to give something back, he says.

“Keeping my sister’s memory alive is on my mind. The calendar will show actual faces of women affected by bleeding disorders. It will help tell their story.”

The McMullans are a family of storytellers. Many of Patrick’s stories include Doreen. “My sister and I were very close throughout our whole life. I was good at making her laugh, at being silly.” Her unexplained bleeding and bruising overshadowed her childhood. “I always knew that she could hit or tease me, but under no circumstance was I to hit back or strike her,” Patrick recalls.

Games with the neighborhood children brought out the bodyguard in Patrick. “When we were playing tag, if she fell and was hurt, I knew it was more serious. I became a protective presence, even though I was younger.”

Once Doreen became a teenager, her “women’s issues” were not openly discussed in the family. “I was not privy to understanding the issues about menstruation or having a child and what that meant for a woman with a bleeding disorder,” says Patrick.

For Patrick, ignorance was not bliss. “If you’re a man and you have a daughter, wife or mother who has these issues, they are your issues, too. If you have to rush someone off to a hospital, you have to know what the issues are.”

As NHF rolls out Victory for Women, Patrick and his family will be at the forefront, promoting it and sharing its message. Knowing the extent of a bleeding disorder imposes boundaries, but also freedoms, he says. “You can work within those parameters to have a successful life. You can wake up and feel capable every day,” Patrick says. “It’s so important that no one else experience a tragedy like this. We all have unavoidable things that happen to us in life. This was avoidable.”

LINKS:

The Full Interview w/ Patrick McMullan and His Mother Connie

The National Hemophilia Foundation

Written by Sarah Aldridge

Photography by Shaun Mader for PatrickMcMullan.com

Design by Marie Havens

Styling by Sam Bolton

Hair & Makeup by Kelly Madigan & Leyda Quintero

Captions:

Connie McMullan, Patrick McMullan, Victory for Women Photoshoot for the National Hemophilia Foundation, at Pier 59 Studios, NYC, August 24, 2010, Photography by Shaun Mader for PatrickMcMullan.com

read the complete article