Unexplained symptoms, hospitalizations and misdiagnoses.
Research shows some rare disease patients endure seven years of that before getting properly diagnosed with a primary immunodeficiency. Add to that scenario the inability to access health information in your native language.
For Hispanic and Latino communities, the language challenge is part of a larger problem with access to preventive care and health insurance, according to the U.S. Centers for Disease Control.
“More than ever people are not able to get hospital appointments and are reliant on online resources and support,” said Pam Rattananont of Global Genes, a rare disease advocacy group. “Having information in multiple languages and providing translated content at events increases education and provides much-needed access to essential information that is needed to manage living with a rare disease,” she said.
Patient-focused organizations such as Global Genes and the Immune Deficiency Foundation (IDF) are helping to empower multilingual patients by offering a growing number of resources in Spanish. Recently, IDF increased their offerings to include:
- A website called the SCID Compass Website
- Spanish Language Resources at Primary Immune.org
- Their first-ever forum in Spanish recorded on May 18
Additionally, IDF will be launching a virtual support group called Grupo de Apoyo at their Primary Immunodeficiency Conference from June 23-26.
"When it comes to the diagnosis and treatment of primary immunodeficiencies, I'm just thrilled that we're taking steps to make sure that everyone has a seat at the table,” said Ashley Ferreira, Program Manager for Diversity and Inclusion at IDF.
Though Googling your health symptoms doesn’t always lead you to the right diagnosis, it can be particularly helpful for people with rare diseases, Anthony J. Bleyer, M.D., professor of nephrology at the Wake Forest Medical School, said in an interview with newswise.
“The availability of focused information about rare disorders on the internet may lead to increased diagnoses of these conditions,” he said. “While online searches can frequently fail to provide relevant or correct health information, the internet does offer those with rare disorders a way to find the rare specialists interested in a particular condition and obtain accurate information about it.”