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Facing and Fighting Bone Marrow Disease (MDS)

One LI Woman and Her Family on the Need for

Bone Marrow Drives and Fundraising

Long Islander Eve Haim has been bravely facing and fighting an affliction called MDS or Myelodysplastic Syndrome. This manifests in different ways, but results from a failure in the bone marrow to produce healthy blood cells. Research shows links to leukemia in certain cases of MDS.

While the initial symptoms are not always so bad, in fact Eve did not even know she had it, learning that you are living through a potentially life-threatening illness can wear the nerves thin very quickly once a patient is diagnosed. Further, the treatment - in Eve’s case, chemotherapy - can be grueling and painful.

But Eve has not let this struggle slow her down. She is actually very lucky to have found a donor for a bone marrow transplant relatively quickly. Some patients never do. As she gets ready to go into that month-long procedure at Memorial Sloan-Kettering Cancer Center, she and her family feel so lucky for this gift that they are working harder than ever in their ongoing efforts to raise awareness and funding related to bone marrow failure diseases.

Eve has shared her experience so far, talking with us about what keeps her going and some important things she would like others to know about – namely the desperate need for more bone marrow drives.

The symptoms of MDS can be slight at first. Eve only found out about her case this past spring as a result of regular medical checkups. Her white blood cell count was found to be high during some blood work. After several tests, she was directed to a specialist who did a bone marrow biopsy and aspiration to determine that she did in fact have a type of MDS.

According to the Aplastic Anemia & MDS International Foundation, people with MDS can either lack the right amount of red blood cells, white blood cells, or platelets (the small cells that help blood to clot). They do all have two things in common: a low blood cell count for at least one blood cell type, and their bone marrow and blood contain blood cells with an abnormal shape, size, or look. In Eve’s case, MDS results in a low white cell count, which translates into a low immune system.

No symptoms ever really surfaced, from the time she was surprised to learn of her case, to today as she prepares for her transplant. The challenge was two month-long stays at Sloan Kettering that started with 24/7 chemotherapy for a week. This is meant to slow down the abnormal cells and create a chance for the normal ones to be produced.

One of the hardest parts, all in all, so far was finding a marrow donor. Eve shared that you need to have a DNA match for a case like hers, in which white blood cells are the problem. She was told there is only a 25 percent chance that even a sibling will be the right match. Ultimately, through the Be the Match Foundation, a donor was found somewhere “across the ocean,” she said, adding, “that’s all they’ll say for now – ‘international.’” Part of the process involves agreeing not to allow donor and recipient to meet for a long time after the procedure. But, it was good luck.

“Oh did I cry when they found a match,” Eve shared. “And when the transplant doctor said the donor could be available even sooner, I cried again. I feel so fortunate that I have ‘common markers.’ I was very lucky. They found a match within two to three weeks. Otherwise, my clock would be ticking.”

Indeed, it is hard to find a match. This is what makes the willingness to be a donor so important. Much of it comes down to a patient’s ethnic background. The more mixed the heritage, the harder it can be to find a donor. Because of this, Eve encourages people to donate. It is painless. You simply get a mouth swab so that your type can go into the database.

“I have a friend who has been in the registry for 17 years and has never been called to donate,” said Eve. But, on the day you may turn out to “be the match,” you will be saving someone’s life.

Further, she urged more blood drive organizers to include marrow drives within their events. More attention to the need for donors in the registry will help build up different possible matches.

Leading up to this fortunate development, friends and family showed great concern and willingness to donate their bone marrow if it would help. “A friend of mine even offered her children’s stored umbilical cords,” Eve said. Indeed it was that kind of support that really made the difference.

“I feel like that old Verizon commercial, with this man who has a whole group of people behind him. I have had all these people behind me, wishing me well,” she shared. “I can’t give it up, I’ve told myself. I’ll disappoint them. They really help me fight.”

The other major thing that has helped her brave this illness and the brutal experience of chemo, and something she offers as advice to others struggling with an illness, is to keep busy.

In her community in the Village of Sea Cliff, Eve has always been very active in things like landmarks preservation, working with historic structures, the local civic association, and putting out a popular digital news blast called the Sea Cliff Tattler (which is how this article came about).

“I have stayed busy in the organizations,” she said. “I like feeling like I am still here and still useful. It’s good to be needed – that’s medicine for me. Many survivors say that. You have to keep a positive attitude and keep busy.”

She even keeps the Tattler going during her long hospital stays.

The rest of the Haim family keeps busy as well. From early on, Eve said, her children became a key source of information about MDS, researching tirelessly.

They also got very involved in fundraising. Her son Daniel, an experienced marketing entrepreneur, hit on a great idea that he hopes will turn into a major force in the effort of raising awareness and money.

Dan knew that in these hard economic times, you have to create the right avenue for donors.

“Funding was the big issue that would come across when I’d speak to groups like the National Bone Marrow Registry,” he said. “A lot of people are not doing well. You and I don’t get raises or see layoffs in town but it’s an equally difficult time for charities. I was told that due to lower donations and federal aid, the time taken in reviewing [bone marrow donors to match with patients] went from a couple of weeks to over 12 weeks. Simply because of money.”

Through his work in online advertising, Dan came across NASCAR as a way to gain exposure for his clients. He realized it could be a great new tool in the fight against bone marrow diseases as well.

He was introduced to the owners of Pocono Raceway, the Mattioli family, whose son Chase is a NASCAR driver. The Mattiolis are major philanthropists and they thought it would be a great idea to have Chase’s car feature a panel promoting the Aplastic Anemia & MDS International Foundation.

Dan said, “This is a foundation that I knew existed, but I didn’t think much about it until I was personally affected. I told them, once you are affected and you take from the till, you feel required to give back more than you’ve taken.”

And the first effort, “The Eve Haim Challenge: Racing Against MDS,” was a successful promotional tool - sponsoring Mattioli at the Pocono Raceway on July 31 and on Aug. 1 at the Sunoco/Red Cross 500. The idea was to get in front of more than 100,000 spectators, as well as millions more through live TV coverage.

The main achievement was that Dan’s efforts raised a net amount double the initial investment that was necessary to do the NASCAR partnership, and this led to a new model for his group. They plan to build more into the 2011 NASCAR season, working with the National Bone Marrow Registry.

He said the tangible aspect of donating to something that gets on TV, as part of an event, made the difference for a lot of donors at a time when it is hard to ask for money.

“I see walkathons where people give $20 or $30,” shared Dan. “I thought, if people are given a larger-than-life goal, they’ll give more. And they did give major donations. I think it hit home, letting people think ‘I was part of creating this.’ So, we raised $10,000 in the first two weeks. Now we want to figure out, how do we move that to $10 million? How can we do this across the country to make a difference in a lot of people’s lives?”

For more information on the Aplastic Anemia & MDS International Foundation. visit http://www.aamds.org/aplastic.

To learn about the NASCAR effort, visit: https://www.firstgiving.com/nascar.

Information on Be The Match and the Bone Marrow Registry can be found at http://www.marrow.org.