Many individuals with rare diseases can feel isolated and overwhelmed. To shed light on this issue, Dr. Efrat Lamandre, the NP with a Ph.D., shared her insights on ABC 7 KABC Los Angeles, CA. During her appearance, Dr. Lamandre emphasized the complexity and uniqueness of rare diseases. She suggests that the rarity is sometimes due to a lack of testing and diagnosis rather than the actual prevalence of the disease.
She mentioned, “Rare diseases might just be because we’re not testing enough or diagnosing enough.” This insight points towards a gap in our healthcare system. This gap, if addressed, could bring much-needed attention and resources to these ailments.
You Are Not Alone
One of the most poignant parts of Dr. Lamandre’s interview focused on the emotional experience of those dealing with rare diseases. She emphasized, “You’re not alone in two ways. On the bad side, you’re not alone because you’re being dismissed and not heard. This is a common thing that happens.“
She reassured viewers that while their experiences of feeling dismissed or unheard may be common, they do not have to face these challenges alone. There are others who understand their struggles and healthcare professionals who acknowledge and validate their feelings.
Empowerment through Support
Despite these challenges, Dr. Lamandre’s message was ultimately one of hope and empowerment. She encouraged patients to keep going and reassured them that they were not without support. “There are other patients and there are providers here that understand what you’re going through and know that your feelings are valid,” she said.
Final Word
Dr. Lamandre’s words made it clear that understanding and helping people with rare diseases is very important. She reminds everyone, both patients and doctors, to work together and create a strong support system. Her hopeful message encourages people to keep fighting and to remember that they are not alone. She believes that with more support and better understanding, people with rare diseases can have a better chance of getting the help they need.
