Hypereosinophilic Syndromes (HES) are a rare, chronic group of diseases and there are many unanswered questions as to the cause and prevention. Living with HES can be challenging, and in this episode, Debbie Alves shares insights about what it is like to live with HES, her road to getting diagnosed and treated, and what she has learned from her journey that could help others.

 

Debbie Alves has a number of medical conditions including asthma and HES. She managed her asthma well into adulthood and continued her demanding career as an economist despite worsening symptoms and complications. After a lengthy journey to her HES diagnosis, her symptoms are now under control.

 

Debbie outlines her long journey within healthcare system, and her various experiences interacting with doctors, specialists, and a diverse team of healthcare professionals with regard to her care. She shares her thoughts on the importance of communication between providers, creating a care team, and becoming an active participant in one's own health care. Although this is a story of one person’s experience with a specific rare disease, Debbie’s journey is relatable to patients who are searching for a diagnosis and working with more than one provider. Tune in to find out more.

 

*Content Warning: This episode includes discussion about depression. Listeners are urged to seek professional help if they struggle with these feelings. 

 

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their doctors. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[1:38] Ryan introduces the guest for this episode — Debbie Alves.

[2:09] What has Debbie’s journey with HES been like?

[5:43] It took 30 years for Debbie to get diagnosed.

[8:36] How was Debbie’s mental health impacted along the way in this journey to diagnosis and treatment?

[10:37] Finding a balance between an illness and the rest of your life can be complicated. What sort of things was Debbie able to do to alleviate that impact?

[14:30] Debbie shares more about the variety of different providers who have supported her in her care.

[16:08] Debbie explains what it was like to have her providers involved in the decision-making process related to her care.

[21:45] What should people who are not currently involved in the decision-making process with their healthcare providers do?

[29:53] In Debbie’s experience, how have providers managed communication and treatment plans?

[35:01] Debbie shares more about her experience with good vs. bad days.

[40:31] Learn more about Debbie’s experiences on her website.

 

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Debbie Alves

George Washington University Hospital

National Institutes of Health

NUCALA

Fasenra

Resources about Hypereosinophilic Syndromes by APFED

Eosinophilic Disorders Support Group and Discussion Community by APFED

Advocacy with APFED

This episode is brought to you thanks to the support of our Education Partner: GlaxoSmithKline.