Patient Voice

One Patient’s Vision Towards A More Inclusive Environment For Rare Diseases

Madaline Lesieur was diagnosed in 2001 with Hypereosinophilic Syndrome (HES), which is defined by The American Partnership for Eosinophilic Disorders (APFED) as:

… A group of rare disorders in which high numbers of eosinophils are found in the blood and tissue, for prolonged period of time (6 months or more) for which a cause cannot be found. While most people have blood eosinophil levels of less than 500/ml, those with HES typically have blood levels of more than 1,500/ml. Continuous presence of high number of eosinophils in blood can eventually cause multiple organ tissue damage as these eosinophils infiltrate different tissues and cause inflammation. HES can affect any organ in the body, including the stomach and intestines, the heart, lungs, skin and other organs (APFED).

The key words here are looking over to “rare” and “illness” which can result in patients feeling alone and looking to medical communicators for support. Lesieur has been a warrior as she goes about each day inspiring others to never give up and to keep one foot in front of the other. It has been a long journey with many relapses of the unknown; however, it is her family, friends and her support system that make all the difference in the world. This is one patient’s journey through diagnosis and an outlook of what still needs to be done in the field of medical communication. A better understanding, further researching and coming together as a community are at the forefront.

When first being diagnosed with hypereosinophilic syndrome (HES) what do you wish you had available to you in terms of patient advocacy?

The opportunity to have some kind of support system with other victims and families. In which more knowledge could be shared and compared as well as help the family caretakers share their experiences and ways to cope.

What are some of the key elements that you look for when looking for support or further information?

Panels, in which patients can share their journey with doctors, researchers, medical communicators and supporters. 

Where do you look most for information or patient advocacy (ex. social media, blog, website, etc.)

The APFED website has been my only solid outreach along with their social media accounts. Very little has come from physicians in my experience leaving medical information limited and harder to comprehend. 

How do you feel patient stories work to connect those in the digital space?

It gives them a chance to share similar stories and an open space to talk about their experiences and any new methods or trials of treatment they have received. It creates a networked community and opportunities for outreach. 

What do you look for now in a medical communicator and what would you like to see be done in the future? 

I would like to see them become more knowledgeable in rare diseases and give it the same amount of importance as the more common world known diseases. 

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