# 13 ‘Rare Disease Truths’ That Will Make You Think

By

PicnicHealth

Feb 25, 2021 • 5 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Whether you’ve recently been diagnosed or you’ve been living with a rare disease for a while, managing your condition comes with some powerful truths. Here are 13 experiences commenters shared with #RareDiseaseTruth. We hope they make you think and expand your understanding of the vast and varied rare disease community. Thank you to Neena Nizar for kicking off the #RareDiseaseTruth conversation.

### Diagnosis is a privilege
> "Diagnosis is a privilege. The average time to a #RareDisease diagnosis is 8 years. I waited 11 for mine. Undiagnosed and self-diagnosed people are a valuable part of our rare community, and we should treat them as such. #RareDiseaseTruth"  
> — **Alea Ricklefs** (@AleaRicklefs) February 12, 2021

### Being a support to families is bittersweet
> "When a family reaches out 2 [@Hsan1eSociety](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw) for the 1st time cause they just found out someone they love has HSAN1E. It's always bittersweet. On 1 hand I'm happy we have provided a place for them, on the other it kills knowing HSAN1E is destroying another family [#RareDiseaseTruth](https://twitter.com/RachelleM_Dixon/status/1358176578476199936?ref_src=twsrc%5Etfw) "  
> — **Rachelle Dixon** ( [@RachelleM_Dixon](https://twitter.com/AleaRicklefs)) [February 6, 2021](https://twitter.com/RachelleM_Dixon)

### You’re an expert, like it or not
> "When I go to a new doctor or to the ER and have to explain my [#RareDisease](https://twitter.com/hashtag/RareDisease?src=hash&ref_src=twsrc%5Etfw) since they’ve never met “an actual patient”, I try to view it as a positive. I’m educating and spreading awareness, right? But sometimes it still feels like a kick in the gut. [#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw)"  
> — **Sabina Kineen** ( [@sabkin12](https://twitter.com/RachelleM_Dixon)) [February 6, 2021](https://twitter.com/sabkin12/status/1358065708387753986?ref_src=twsrc%5Etfw)

### Working for treatment that may not come in time
> ["#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw) we work tirelessly with the knowledge that treatment may not come in time for our own kiddos, but it may be what decides the future of others. A really hard truth for patients/parents driving new treatments. [#StillHeartbroken](https://twitter.com/hashtag/StillHeartbroken?src=hash&ref_src=twsrc%5Etfw)"  
> — **Neena Nizar** ( [@NeenaNizar](https://twitter.com/sabkin12)) [February 15, 2021](https://twitter.com/NeenaNizar/status/1361334550111133698?ref_src=twsrc%5Etfw)

### The words you say matter, and ‘be patient’ is hard to hear
> ["#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw) There is a sense of urgency in dealing with a rare disease. We know that working towards a treatment/cure takes time but “Be patient” can be one of the most frustrating things to hear. It’s so hard to be patient when rare disease isn’t so rare!"  
>  — **Amy Casey** ( [@hygienie1](https://twitter.com/NeenaNizar)) [February 13, 2021](https://twitter.com/hygienie1/status/1360602589004496902?ref_src=twsrc%5Etfw)

### For some, the science just isn’t there. Yet.
> "My [#RareDisease](https://twitter.com/hashtag/RareDisease?src=hash&ref_src=twsrc%5Etfw) was diagnosed clinically. Genetic test shows variants of uncertain significance. That doesn’t mean there’s not a real why behind my issues. The science just isn’t there. Yet. We need more research. Everyday realities are known, significant, real. [#RareDiseaseTruth](https://twitter.com/RareDiseaseDad/status/1359633716708999169?ref_src=twsrc%5Etfw)"  
> — **Adam Johnson**- DadVocate ( [@RareDiseaseDad](https://twitter.com/hygienie1)) [February 10, 2021](https://twitter.com/RareDiseaseDad/status/1359633716708999169?ref_src=twsrc%5Etfw)

### ‘The Folder’ or ‘The Binder’ is something all rare parents know about
> "Having to create a (medical) folder with all the info on your child's [#RareDisease](https://twitter.com/hashtag/RareDisease?src=hash&ref_src=twsrc%5Etfw), for all the doctors visits, because the doctors vary and the info you need to give them is more than you can remember :( We need a multi-disciplinary team for our kids!! [#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw)"  
> — **Christina** ( [@cmutena](https://twitter.com/RareDiseaseDad)) [February 14, 2021](https://twitter.com/cmutena/status/1361034973499822084?ref_src=twsrc%5Etfw)

### Sharing hard truths with family
> "The hardest part of deciding not to have children was telling my parents. Constantly being told how they “can’t wait to have grandchildren” —that responsibility weighed heavy on me. I made up my mind a while ago, but to my surprise, they were supportive of me. [#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw)"  
> — **Olivia Viola** ( [@theoliviaviola](https://twitter.com/cmutena)) [February 16, 2021](https://twitter.com/theoliviaviola/status/1361734790408462350?ref_src=twsrc%5Etfw)

### Nothing should be done for the patient without the patient
> "Those looking to help [#RareDisease](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw) patients must include patients & caregivers throughout the process. Nothing should be done for the patient without the patient. Working on a condition or treating a patient isn’t the same as living with it 24/7. [#RareDiseaseTruth](https://twitter.com/KhrystalKDavis/status/1358825101198778372?ref_src=twsrc%5Etfw)"  
> — **Khrystal K. Davis, JD**( [@KhrystalKDavis](https://twitter.com/theoliviaviola)) [February 8, 2021](https://twitter.com/KhrystalKDavis/status/1358825101198778372?ref_src=twsrc%5Etfw)

### The best days of my life have come after my diagnosis
> "Most of the best days of my life have come after my diagnosis because I finally understand my body; I can work with my limitations and know that they are not my fault. Imagine what could have been...that part is harder. [#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw)"  
> — **Andra Stratton** ( [@livinlavidalopo](https://twitter.com/KhrystalKDavis)) [February 11, 2021](https://twitter.com/livinlavidalopo/status/1359878389134336002?ref_src=twsrc%5Etfw)

### Embracing the future and the unknown
> ["#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw) My disease has brought so much pain, sorrow & loss. But it's also brought unimaginable kindness, joy & hope. How? This [#RareDisease](https://twitter.com/hashtag/RareDisease?src=hash&ref_src=twsrc%5Etfw) community. Without it I'd B stuck in past, searching 4 a way back 2 what was. Instead I embrace the future,the unknown. Good & Bad"  
> — **Marni Cartelli**( [@Purrfectly_Rare](https://twitter.com/livinlavidalopo)) [February 13, 2021](https://twitter.com/Purrfectly_Rare/status/1360398233739100164?ref_src=twsrc%5Etfw)

### Your life will never be normal again
> ["#RareDiseaseTruth](https://twitter.com/hashtag/RareDiseaseTruth?src=hash&ref_src=twsrc%5Etfw) After diagnosis your life will never be normal again. I wouldn’t have chosen this journey, but time and time again I have found beauty in life’s challenges. After watching my child continue to fight, it has shown me strength, resilience, and empathy. [#UBA5](https://twitter.com/hashtag/UBA5?src=hash&ref_src=twsrc%5Etfw)"  
> — **Rachel**( [@Rachel10302016](https://twitter.com/Purrfectly_Rare)) [February 13, 2021](https://twitter.com/Rachel10302016/status/1360567336877645827?ref_src=twsrc%5Etfw)

### Letting yourself dream for the future
> "Months ago a “healthy” friend asked me what my dreams are for the future. The truth is I never planned past college or let myself dream. I didn’t know if I’d live long enough to accomplish anything. [#RareDiseaseTruth](https://twitter.com/lilannalaurent/status/1357345026443935749?ref_src=twsrc%5Etfw) I’m finally letting myself dream ❤"  
> — **Anna Laurent** ( [@lilannalaurent](https://twitter.com/lilannalaurent)) [February 4, 2021](https://twitter.com/Rachel10302016/status/1360567336877645827?ref_src=twsrc%5Etfw)

Thank you to the members of the rare disease community who took to social media to share their rare disease truths.