My Purpose is to Enlighten and Inspire Individuals Affected with Multiple Myeloma and AL Amyloidosis
Desiree
State: Florida
Congressional District:
Diseases
Blood Disease, Cancer, Heart Disease, Rare Disease
Issues and Challenges
Desiree has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Surprise Billing, Job Insecurity / Loss
My Story
In 2018, I was diagnosed with a rare and incurable disease called Multiple Myeloma and AL Amyloidosis. This diagnosis changed my life. I was devastated.
I would like you to think about these few questions today. These are things that most people question or think about in their life.
- Did you ever think about what you are going to do tomorrow?
- What are you going to do next week?
- Next month maybe?
- The end of the year?
- Plan a vacation with your family?
- How about your job and financial goals?
Well, these are some of things that I thought about. I had it all planned out. I was going to complete the remainder of my retirement. Then the big boom came. One day I was healthy and the next day I was sick of no return. I was sick with something that could not be cured with a simple bill. This was the last thing that I thought about would happen to me.
When you are making these life-changing decisions on Capitol Hill, that not only affect my life but many who were diagnosed with a rare disease. I would like you to think about how your decisions affect those who need the necessary medical care. The actions that I would like you to consider is to restore the funding Congressionally Directed Medical Research Program (CDMRP) which affects new treatments multiple myeloma patients. These cuts will undo years of advancement in research and treatment. In addition, to restore NIH funding which helps with research and clinical studies for treatment.
My Motivation and Inspiration
Many people are unaware of Multiple Myeloma and AL Amyloidosis. Multiple myeloma can affect many people in the African American community. My purpose is to enlighten and inspire individuals who have been affected with the disease and/or their caretakers. Second, to educate the community at large. Third, to make legislators aware of how their decisions affect the rare disease community.
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