Take Charge of Your DBA

Hello DBA family:

I want to say at least from my perspective about being a DBA survivor that everyone’s experience with DBA is different in the way one feels about whether it gets easier or not. There is no right or wrong answer in how to express ourselves. There is no blue print in how to cope in confronting DBA. No doctor, no nurse, or scientist can do this for us. The answer comes from within. Each DBA patient and family member or friend will live with DBA differently and there is no right or wrong way to live with DBA. It is vital for a person with DBA to express themselves, to open up. It helps with healing our DBA emotional wounds.

WE are a family, and I believe the purpose of communicating on DBA yahoo groups is to share our experience, knowledge, to lean on each other for help, advice, guidance, and friendship. To help our fellow DBAer's, family and friends of DBA who support our cause to find a better treatment and cure to DBA!

What I know about being a DBA survivor in determining whether it gets easier is the following. We must accept DBA in our lives, and live life to your fullest moment and be very thankful for what one has; our life, our family, and friends. We may not be able to control our circumstances but we can control out thoughts, attitudes, beliefs, and values. I have learned as a person with DBA that the most important time is NOW. NOW is not what we should of, could of or would have done if our hemoglobin's were different or if we should have received a blood transfusion sooner. NOW represents the future. It represents HOPE for a better tomorrow. And yes we must also be realistic about our own situations.

It's okay to cry, it's okay to be frustrated, resentful, and often mad at the world. One must remain strong and not allow DBA to make us feel it controls our existence. It's not going to hide the suffering, the pain a person or loved one experiences with DBA. One must continue to live, going to church, going to temple, going to school, college, work, shopping, being with family and friends, but most of all living life to best of one’s ability.

One will have good days and bad days with DBA. Surround yourself with those who support your values, ideas, and dreams. Do these people make me feel good? How do they make me feel? Surround yourself with those who love and care about your existence. Having DBA is about making tough choices in your treatment, management and lifestyle with DBA. Take charge of your DBA! NEVER allow oneself to think you’re a victim! Instead think like a survivor and live with your DBA as it is a manageable condition. Once there was once limited treatment and management of DBA; today we are stronger and able to live with DBA. YES, we are a stronger DBA community. Go out in your community and volunteer and write your congressman to support more public and private funding for DBA research and treatment. Support your local school, church, temple, and charity. Get involved in helping others. You have the power to live your dream! Go back to school, get a new job, or start a family. With DBA you can! And yes, for some it will be a challenge. It is possible!

As I grew up with DBA I read books about positive thinking, motivation from authors such as Napoleon Hill, Anthony Robbins, and books about military leadership, and books about empowerment and having faith. I learned how to control my fear, uncertainty and doubt of living with DBA. I asked myself thousands of times the same question, "Does it ever get easier?" I heard no answer, but knew within my heart that I am thankful to be alive, thankful for my loved ones, and health care professionals keeping me alive.

Recently I was blessed to find out that I do not have cancer after discovering in July on a CT & PET Scans that I had a Solid Tumoral lesion and Soft Tissue mass in my throat. After my surgery to remove my tonsils and do a biopsy I was dreading hearing the words, "You have cancer." I am blessed to hear the words, "You do not have cancer" from my surgeon. I have been in remission with DBA for over 20 years. I have been told while growing up that the life expectancy for a DBA person is in their mid 30s. I have been told I could develop cancer.

On Friday, October 31st, 2008, I will celebrate my 38th birthday!

NEVER, NEVER GIVE UP HOPE! & MAY GOD BLESS YOU ALL!!

Jason Rose

38 years with DBA/21 years in Remission