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DBA Families in the News

“Life with DBA” by Laurie Shore, DBA speaker at the 14th DBA International Consensus Conference

LaurieWhen I was diagnosed with Diamond Blackfan Anemia back in 1970, I was lucky enough to have a doctor that knew about DBA and knew what he was dealing with. I was put on a course of treatment and throughout the years, the doctors did what they could. But having DBA was a very isolating experience for my mom and my dad and myself. I was the only one around who had DBA. There were no support groups and certainly no internet. So as I grew up we just had trust in the doctors and moved forward. It was oftentimes very lonely.

In my late thirties, I was beginning to struggle a bit with the DBA. Some of this was my fault because I had developed chelation struggles. Yet, some of this struggle was having doctors that simply didn’t know what to do with a person like me. What do you do with a 38 year old person who has been receiving transfusions for 33 years, was completely iron saturated and never felt good? None of the doctors I dealt with had good answers. I felt defeated.

It was then I decided to become pro-active with my health and find some answers for myself. I searched the internet. I found the doctors in Long Island New York. I was able to meet with them and find some answers. I began an aggressive attack on iron and began to learn many things about DBA. First of all, I learned about the invaluable resource of Dawn Baumgardner and the DBA Foundation. The Foundation provided a wealth of information, resources, and support. I also learned about Camp Sunshine and attended my first session.

Camp Sunshine was an amazing experience for me. For the first time I could sit down face to face with another adult DBA patient and compare notes on growing up with DBA and have someone who truly understood my story. At Camp Sunshine I also met parents whose children have DBA. I tried my best to answer their questions and be a support to them. As I met parents and their DBA children I started to feel a new responsibility. As an older DBA patient, I felt I owe it to them to live my life to the fullest and always be a good example of what being older with DBA can be. Most importantly, at Camp Sunshine, I met researchers.

Finding out that there is research being conducted on DBA was startling to me. I had been convinced throughout my life that research was not conducted on DBA simply because it is so rare. Little did I know that there are many researchers around the world very interested in DBA and that they are doing all they can to find answers. So you can understand how powerful it is for me to be here and to see the dedication there is to DBA and to research.

Knowing about DBA research is remarkable to me. It brings about a hope that previously did not exist. It is not easy to live with Diamond Blackfan Anemia. Life is challenging every day and it becomes very tiring having to continuously face health issues that just do not go away. However, now I have a hope that something can change. A new treatment might come along. Or perhaps the ultimate goal of a cure might be found. I now have a reason to keep myself as healthy as possible, because I want to be ready. I will be ready when the announcement is made and they are looking for DBA people to try a new treatment or procedure. Research has already given us genetic answers with gene identification.  It has given DBA patients fertility choices that were not possible before. Research can give more vital information for bone marrow transplant decisions.

Research keeps me wanting to fight even when I am tired of the doctor appointments, the medications, and the needles. When I’m overwhelmed with tiredness, aches, pains, and questions of why me?  I remember there are people out there trying to help.

I have lived most of my life with DBA isolated and alone. Today I know that I am not alone. I have a dedicated DBA family to turn to and rely on. I have a DBA Foundation earning money and supporting research. I have doctors to turn to with vast DBA information. I have a DBA family on Facebook who I can get messages from daily. I can offer encouragement and support and get that same support when I need it. Most of all I have the hope of research. There is no doubt that children with DBA today have much more information to live healthier lives. My parents were told I would live to maybe twenty years old. I don’t believe the average DBA patient would ever be told something like that today. This young generation of patients can grow up knowing research is occurring and can benefit from all the information that has already been and continues to be gained. I am forty five years old. I have a future too. I have made it well beyond that twenty year expectancy and plan to keep on going for a long time. I do so with the hope of something new in my future. So get to work.  Keep it going.  Make that breakthrough. When you do, I will be ready. I thank you whatever your role with DBA may be. I thank you for your work, your dedication, and for the hope that you give to me and many other DBA families to keep ourselves healthy and to having a better future.

 

Posted on: August 26, 2016 Categories: Families in the News Tags: , , , ,

Welcome and thank you. Christopher Vroman’s Story shared at the 14th DBA International Consensus Conference

It means more than you could ever imagine to myself, my brother and to the rest of my family that you have come here to collaborate with great minds in order to work towards a cure for DBA.

As some of you may already know, I was diagnosed with DBA when I was seven weeks old, and I have never known a life outside of DBA. In many ways, this is a ray of light in what many believe should be a time of darkness. Being medicated with iron chelators and going in for transfusions every three weeks was set as the standard of living for me at a young age, so in a way, it’s just a part of my life that I never really thought about when I was young.

But as I grew up, I began seeing the way other people were able to spend sunny Fridays at home or outside, not in an eerily clean hospital with a needle in their chest. I saw how other kids could run as far and as fast as they wanted, and I could only keep a steady jog for 15 minutes before I felt like I would pass out. The older I got, the more I got to thinking, ”Well…this kinda sucks.”

When I reached a certain age, I realized and accepted what I never wanted to: my standard of living is not normal. As I finished up high school and entered into college, this thought stood out to me consistently. Every day that I’d wake up to a splitting headache because I was due for a transfusion, I thought about it. Every time I reached the top of a staircase feeling less like a man walking to class and more like Frodo walking up the steps of Mount Doom, I thought about it. It was practically unshakable.

And then, as I got older, I realized something else; something that was far more important than an understanding of my impairment. I realized that I shouldn’t care about what I could and couldn’t do. DBA was a part of my life and it was always going to affect me in one way or another. In that moment I realized that when it does try to stop me, I have two choices. My first choice is to accept that my illness is no fun, and has no benefits whatsoever and to feel sorry for myself. My second choice is to adapt. DBA is a part of me, but it does not define me. I’m not Christopher Vroman, the DBA patient. I’m Christopher Vroman, the guy who can write short stories and play ultimate frisbee with my friends if I want to, even if it makes me feel like a mostly empty packet of Capri-Sun. I want a future: a career, a wife, kids. I want to become a better writer in the professional world, and I want to entertain people with stories. I’m not going to let DBA keep me from that future, and in the context of my fight with my illness, this realization was my moment of victory. Of course, I still selfishly pray that I’ll get to see a cure in my lifetime, but until that point, I’m going to live my life the way I want and the way God has called me to.

Of course, I can stand up on my soapbox all day and declare that DBA is an issue of mind over matter, but the reality is that when it comes to struggling with this illness, I’ve had it easy. Some of you may remember that I wrote you a letter seven years ago, asking you to find a cure for DBA. I still desperately want to see you do that, but for entirely different reasons. You’re not here to find a cure for me; you’re here to find a cure for people like my younger brother; DBA patients who’ve been thrown every curveball that life can pitch. I will not be kept down by DBA. I’ve had that moment of clarity. You’re here so that people like my brother can have theirs, and for that, I thank you all for coming to this event.

Posted on: August 26, 2016 Categories: Families in the News Tags: , , ,

DBAF Board Member Appointed As Reviewer

Congress has again made funds available to the Department of Defense (DOD) for the Bone Marrow Failure Research Program (BMFRP). The DOD, in turn, is making funds available to scientists around the world with the vision of understanding and curing bone marrow failure diseases.

Researchers apply to DOD for support of their research and for research training by submitting an application to be put through the process of peer review. The peer review panel usually consists of ten to fifteen scientists with specific expertise and, unique to the DOD program, one to two people living with bone marrow failure appointed to serve as consumer reviewers. This panel is tasked with assessing the scientific and technical strengths of research applications according to an established set of evaluation criteria.

The DBAF is pleased to announce that our Board Member, Jacy Downey, PhD has been accepted to serve as a consumer reviewer. Jacy stated,  Jacy (2)

“I’m excited to be given the opportunity to represent the DBA community as a reviewer for important bone marrow failure projects to be funded by the DOD. I will do my best to serve the interests and needs of my DBA family.”

Individuals who have first-hand experience with bone marrow failure and who exhibit accomplishments and commitment to bone marrow failure advocacy and/or support are qualified to participate in scientific peer review as consumer reviewers. Comments made by consumers help to broaden the discussions by including issues such as the quality of life for those living with bone marrow failure, psychosocial needs, and ethical issues.

Consumers represent the perspective of patients, survivors, and family members to the peer review process. Inclusion of consumer reviewers enables those affected by bone marrow failure to participate in the process that helps set the direction for current and future research.

Congratulations to Jacy!

Posted on: August 28, 2014 Categories: Families in the News, News, Spotlight Stories Tags: , , , ,

Dr. Jeffrey Lipton Honored at National Cancer Center’s 60th Anniversary Gala and Nobility in Science Award Presentation

Please join us in congratulating one of DBA’s true heroes, Jeffrey M. Lipton, MD, PhD, Director, Hematology/Oncology and Stem Cell Transplantation at Cohen Children’s Medical Center of New York. On June 12, 2013, Dr. Lipton was honored by the National Cancer Center for his outstanding career of advancing science. His extensive research in hematology and stem cell transplantation has changed the lives of many patients.

One of those patients is ten year old DBA patient, Katie Trebing. Katie, along with four other of Dr. Lipton’s patients, received Courage Awards during the event.  Katie underwent a bone marrow transplant in 2006 and is a testament to both courage and spirit. Katie’s mother, Stacy, added,

“There are hundreds of DBA patients who are courageous every day; their families are courageous every day. We represented the hundreds of patients with DBA whose lives have been touched by Dr. Lipton. Katie humbly accepted her award knowing that we represent an entire community full of courage and drive.”

We are grateful to Dr. Lipton for his dedication and commitment to Diamond Blackfan Anemia and our patients. We congratulate him on this well-deserved honor and wish him continued success! Congratulations, Dr. Lipton! Congratulations Katie and family!  Thank you!

Posted on: June 12, 2013 Categories: Families in the News, News

A Tattoo of Pride and Hope

Our logo never looked so beautiful!! Shelly Marquer, an adult DBA patient with a real fear of needles, proudly and triumphantly displays her new tattoo. If you look closely, you will notice a space between the words Cure and DBA. Shelly states, “If, in my lifetime, a cure is discovered, I can go back and have a ‘d’ tattooed in that space. Then, it will say ‘Cured DBA’. There’s always hope.” Together, let’s work on getting that “d”.

Posted on: March 24, 2009 Categories: Families in the News

Congratulations to the Bell Family for being selected for ABC’s Extreme Makeover: Home Edition

Tucson, AZ – originally aired March 22nd 8:00pm. The episode is still available to watch online at http://abc.go.com/primetime/xtremehome

On January 27, 2009, American Red Cross hero Lizzie Bell and her family were greeted and whisked away by Ty Pennington and “Extreme Makeover: Home Edition”. While their house was under construction, the Bells were further surprised and congratulated by other DBA families at a DBA luncheon in Schneider’s Hospital on January 31, 2009.

Posted on: March 23, 2009 Categories: Families in the News