rare connect
Rare Disease Day is on February 28, 2022! In the United States, a disease is considered rare if it affects fewer than 200,000 Americans, 7,000 illnesses fall into this category, with 1 in 10 Americans being affected.
Patients that have a rare disorder have longer periods of suffering before finding answers. Often, patients are treated “off-label” (treatments that are not approved by the FDA for the specific disease), which can lead to insurance reimbursement problems, and in many countries, no affordable access to essential drugs. The good news is, once a diagnosis and treatment are established, many patients succeed at controlling the disease and its symptoms.
To fully understand the importance of awareness, please take a glimpse into the life of this rare disease patient, Hiba Tohme. Hiba shares the story of finding her ECD diagnosis and finally accessing the treatment that helps her function in daily life. Her struggles are eye-opening and a testament to why awareness is so important.
“It is vital to accept your illness and never give up by shouting loud and clear that you can cure it. I have become a specialist in this rare disease, unknown to everyone, including the most illustrious doctors. Erdheim and Chester became two shadows that followed me everywhere and on which I wanted to shed light. I hope this testimony can help advance science and better care for people with Erdheim-Chester disease.” – Hiba
