Small Cell Lung Cancer (SCLC)

Join the Conversation on
Small Cell Lung Cancer (SCLC)
24 people
0 stories
2 posts
About Small Cell Lung Cancer (SCLC)
Explore Our Newsletters
What's New in Small Cell Lung Cancer (SCLC)
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

What advice do you have for someone searching for a rare disease diagnosis?

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

Many Faces of LEMS - lemsaware

14 reactions 8 comments
Post
See full photo

What advice do you have for someone who is newly diagnosed with a rare disease as an adult?

Getting a rare disease diagnosis can be tough, but adding one on top of the complexities of adulthood can be even more challenging.

What advice do you have for an adult who’s been newly diagnosed with a rare disease? How did you “adjust your sails” and adapt to make room for it?

✏️ 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 #MuscularDystrophy #LungCancer #Spoonie #MentalHealth #LambertEatonMyasthenicSyndrome #MyastheniaGravis #neuromuscularimmunoglobulin #CheckInWithMe #SCLC

15 reactions 7 comments