Facing a Diagnosis With No Treatment

In today’s episode, guest Elana Rose sheds light on her personal experience with rare diseases and how this has changed her perspective in life. While there may be as many as 300 million people living with rare diseases around the world, many of them feel lonely. What is it like to face a trial with no real treatment? Listen in as Elana gives her background with CIDP and a brain tumor, her reaction to receiving the diagnosis, and what it’s like to have no direct treatment.

Elana shares advice for others who find themselves in this same tough position. She encourages listeners that if they know there is something wrong, stick with it and get a diagnosis. While not many people understand what those suffering from rare diseases are going through on a day-today living basis, Elana shares what great impact support groups and organizations can bring by way of significant encouragement and therapy. She argues that the organizations raising funds for research are equally as important as those bringing encouragement to the afflicted. Learn about the “Brain Box”, a process of understanding what a disease is, how to deal with it, and the support network surrounding.

People can often feel lonely because they do not look like they are sick or suffering. With a lack of sympathy due to an issue that cannot be seen physically, Elana has learned much about the patient experience and that affects her work interactions. Being a person that fights and refuses to take “no” for an answer, Elana has gained a different perspective on her diagnosis and working to find treatments. Learn what it is like being involved in research, where it is now, and looking back to what it has been. Listen in to hear about the shocking statistics Elana shares, and the need for more active involvement in these spaces.

As the episode draws to a close, Kathleen asks what advice Elana has for manufacturers and pharmaceutical companies—listen to her call for greater research. Don’t miss out on the key message of raising awareness: select a charity from any country—and get involved!