intravenous immunoglobulin

Between managing symptoms, juggling doctors’ appointments, and trying to find a name for what you’re experiencing, the journey to a rare disease diagnosis can be a bumpy one. That’s why it helps to have a community that “gets it” in your corner.

If you’ve been through the rare disease diagnostic process before, what advice do you have for someone just starting their search for answers? Do you have any tips for communicating with health care providers?

And remember, no matter where you are in your rare disease journey, you’re your own best health advocate. We’re cheering you on!

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. We may use your answer in an upcoming story on The Mighty.

💡 If you’re looking for more resources on navigating life with a rare disease, check out Catalyst’s new program at Many Faces of LEMS - lemsaware

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #LungCancer #SCLC #CheckInWithMe #Spoonie #MentalHealth #Caregiving #MuscularDystrophy #IntravenousImmunoglobulin

From family planning and relationships, to employment and retirement, living with late-onset rare disease can affect every single touchpoint in a person’s life (much more than others even realize).

But there’s strength in community, so we'd love for you to pay it forward. What’s a piece of advice you can share about your day-to-day experiences with navigating rare disease? What’s helped? What hasn’t?

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #CheckInWithMe #Spoonie #MentalHealth #LungCancer #SmallCellLungCancer #MuscularDystrophy #IntravenousImmunoglobulin #NeuromuscularDisease