RARE Global Advocacy Alliance Member Spotlight: Karen Jones
June 29, 2022
Organization Name: wAIHA Warriors
Disease Affiliation: Autoimmune Disorders
Mission:To alleviate suffering and the socioeconomic impact of wAIHA through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient engagement.
What led you to the rare disease community?
I was diagnosed with warm Autoimmune Hemolytic Anemia in 2019 and desperate for information. So I contacted our rare disease organizations, including Global Genes, NORD, and Autoimmune Association. I was thrilled to be one of the first wAIHA Warriors, then two years later had this fantastic opportunity to become Executive Director!
What do you think are the areas that are lacking in the community (specific to your org or in general)?
Mental health resources specific to rare diseases for both patients and families.
What are some of the pain points?
Many patients experience dangerous symptoms resulting in numerous trips to the ER as they struggle to get a diagnosis of wAIHA. If corticosteroid immunosuppressants are not effective in controlling the vast hemolysis, there are a limited number of treatment options for wAIHA and nothing FDA approved. Often, once treatment is finally successful, it can be effective only for a limited time until symptoms reoccur. Remission is not guaranteed for any length of time.
What are your areas of expertise?
I taught middle school through higher education for many years and hold a terminal degree in Educational and Organizational Leadership. I was a patient of wAIHA, and like many of us, I was reading everything I could find, talking to other patients, and exploring physicians and treatments, until I went into remission about a year later.
What is your hope for the future for rare diseases?
My big dream for all rare diseases is that they are eradicated! In the meantime, my hope is that we can find treatments to control symptoms enough to improve patients’ quality of life sufficiently to care for our communities and families.
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