Maryland woman named hero for work on her disorder

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HAGERSTOWN, Md. (AP) — Diane Blackstock had always bruised easily.

Bloody noses were par for the course, as were headaches. It was her normal.

"I'd wake up and my pillow would be bloody from my nose bleeding in the night," she said.

When Blackstock, 59, of Hagerstown, was 27 and pregnant with her second son, she learned that her "normal" had not been the "normal" of most people.

When she had her first son, Adam, now 34, Blackstock experienced a tear in her uterine wall and her baby was born one month premature.

During her second pregnancy, her blood pressure rose "sky high," Blackstock said. She was diagnosed with preeclampsia, a condition that pregnant women can develop that is marked by high blood pressure and protein in the urine.

Her doctor sent her to University of Maryland Medical Center where her son, Danny, now 32, was born at just 28 weeks of gestation weighing only 2 pounds. The year was 1982. Doctors told her that she had myeloproliferative disorder, known as MPD.

"The main symptom is having too many platelets. Like your body goes crazy making platelets, making the blood too thick and hard to pump," she said.

Doctors reviewed blood work that Blackstock had done five years earlier at age 22 when she had her gall bladder removed. They said it indicated that she had the disorder even then and possibly for her whole life.

"They told me at the University of Maryland that I was the only person they knew of with it that young. There were probably others like me who were not diagnosed, but it was supposed to be a disease of 60- or 70-year-olds. So, they were scratching their heads, not sure what to do with me," she said. "It was very scary because I didn't know anyone else who had it. Now they are finding more and more."

Drawing on the sense of alienation and loneliness she experienced, as well as the knowledge that she came to gain over the years, in 2011, Blackstock began to run a myelofibrosis support group on Facebook. Today, the group serves approximately 1,400 patients and caregivers on at least four continents.

On Dec. 5, Blackstock was honored as an MPN Hero at a celebratory gala in San Francisco prior to the American Society of Hematology's annual meeting. She was among a group of nine clinicians, advocates and caregivers recognized for "improving the lives of people with rare blood disorders," a press release said. The gala was sponsored by Incyte Corporation, which researches the molecular basis of disease, and by CURE magazine, a free quarterly for cancer patients, survivors and caregivers.

By 2005, Blackstock's condition has progressed to myelofibrosis, a related disease that she said is characterized by more severe symptoms and "becomes terminal illness at some point."

Most notable with the disease is a severely enlarged spleen.

"A spleen should be about the size of a fist. Mine starts under my rib cage and goes clear down to my groin and then back up again. It grows not just in length, but also in width and depth," she said. "I've known people whose spleen has actually attached itself to other organs, pushed them out of the way and caused them not to work. It's grown against the lungs decreasing their room to function."

Treatment of such cases is complex and presents many obstacles, she said.

Blackstock said she joined Facebook in 2011 for the purpose of joining a support group run by another individual.

"Then Facebook made a change making everything public posting," she said. "When you are a patient, when you have a support group, people are talking about their labs, about how they feel, giving one another advice. You don't want that out there for everyone to read, just like you want privacy with your medical treatment."

Blackstock started a new, private group — Myelofibrosis Private Support Group — along with Dolores Reed and Martine Rousseau, two other patients she met online. Their disorder is the heart of their connection. Though she has impacted the lives of others through her work with them, Blackstock said she has never met the women and is not sure where they live.

"Dolores lives somewhere in New York state, I think and Martine lives in New York or Canada," she said.

Blackstock is reluctant to take too much credit for the site and its accomplishments.

"I wrote the disclaimer that tells who's allowed to join and I found the picture that we used as a timeline picture, you know," she said. "But I wasn't the one who set up the initial phase of the group. We all did that together chatting on Facebook."

Her main reason for wanting to start a group, she said, was to provide patients with "somebody to talk to that's been through it," she said. "I feel very close to some of the members. When I became disabled, I felt sad that I'd lost my 'purpose.' Any time I am able to help someone on the site, it gives me a new sense of purpose. We even occasionally do prayer chains within the group for those who believe."

Most days, she spends "several hours a day, twice a day, making sure the site is running smoothly."

"It's mostly dealing with people who are just finding out, who want to know what to do, who to see, to talk about their fears, that kind of thing," she said. "What most people get from it is one finding out they are not alone. Because it does make you feel alone. You don't usually have other people in your city or state who have it. Until I got really involved, I had never met anyone who had it."

Only about 18,000 people in the United States have myelofibrosis, Blackstock said. It is often referred to as an "orphan disease."

Blackstock was nominated for the MPN Hero award by a man who has cancer and whose wife has myelofibrosis. The man is a Baptist pastor from Ohio named David Denny, she said. She never met him until the recent award ceremony.

"When (his wife) was first diagnosed, we did a lot of private messaging. I think he appreciated that and that's why he nominated me," she said.

This year was not Blackstock's first time being nominated for the award.

Last year, in the inaugural year, someone else nominated her and she declined, as she didn't feel right about not recognizing the other two women involved with managing the site.

This year, however, when Blackstock learned the ceremony would be in San Francisco, she couldn't resist. She attended the ceremony along with her husband, Don Blackstock.

"I've always wanted to see the redwood trees," she laughed, "and I figured this would be the only time in my life that I would get to do that. So, we took a little excursion to Muir Woods, we did Alcatraz and sightseeing stuff."

Sponsors paid for the flight and two nights at the Hilton San Francisco Financial District, and the Blackstocks extended their stay for the rest of the week at another hotel.

Blackstock said when she was diagnosed, doctors were unable to give her a solid prognosis or life expectancy. But she believes she has surpassed most expectations.

"Twice, over the years, I got, like, 5-year life expectancies. Today, I am at 37 years later, that I know of. Maybe more," she said.

She has seen progress within the medical community in terms of knowledge of the disease over the years, and remains hopeful for further advances.

Five or 10 years ago, she said, the U.S Food and Drug Administration changed the categorization of the disorder, calling it myeloproliferative neoplasm instead of myeloproliferative disorder.

"Now it's known as a type of leukemia, as cancer, so there are more opportunities for the researchers to get grant funding," she said.

Blackstock worked in the banking industry for most of her adult life. Besides MPN, she has diabetes and cardiopulmonary disorder.

In 2009, the impact of her symptoms became such that she needed to retire.

"I can no longer work, mainly because the fatigue is so bad. When it hits, you could fall asleep just like that," she said. "You feel like you are walking around with a wet blanket pushing you down. You can't think well."

Blackstock has participated in several clinical trials. At this point, she is weighing the possibility of a stem cell transplant, which she said is "the only possible cure."

"But we don't survive (stem cell transplant) as well. We tend to lose people during the process more because of the scarring of our bone marrow and because of our weakened immune systems," she said. "It's a really hard decision to make. And a lot of us don't have good matches."

One of the most common themes among members of the support group is that "we don't usually look sick," Blackstock said.

"Unless we are really at the end stages, people tend to not believe us or to make light of what we are dealing with," she said. "Some people even have family members who don't believe them."

Blackstock feels blessed in that respect.

"My family has been wonderful," she said.


Information from: The Herald-Mail of Hagerstown, Md.,

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