Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness
#HAE #CaregiverLove #CaregiverAppreciation #ChronicIllnessLife #HereditaryAngioedema #RareDiseaseCommunity #SpoonieSupport #InvisibleIllness #ChronicWarrior #RareDiseaseWarrior #FamilyCaregiver #PatientAdvocate #ChronicIllnessAwareness #BioNews #AngioedemaNews
After 60+ surgeries and a rare 1-in-126-million diagnosis, she’s still the bravest, strongest, most social butterfly around.
And now… thanks to our donors, she has a brand-new accessible van to keep her soaring.
#RareDiseaseWarrior givebutter.com/2025BellaP
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness
I don’t just talk about healing. Do it. Grace, grit, and growth. One day at a time. This is your reminder: you’re doing better than you think.
#healingisaprocess #healingjourney #selflove #nursingstudentlife #rarediseasewarrior
Discover Hollie's story: https://bit.ly/4lDaF0K
From patient to powerhouse, she’s now fighting for a healthcare system that truly sees rare disease patients. 👊
#Angioedema #HAE #RareDiseaseWarrior #Bionews #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Discover Hollie's story: https://bit.ly/409g8UZ
#Angioedema #HAE #RareDiseaseWarrior #Bionews #ChronicIllnessAdvocate #HAEAwareness #AngioedemaAwareness #AngioedemaNewsToday #InvisibleIllness #Misdiagnosed
Cystinosis is a systemic disease, cystine crystals accumulate in almost every organ/tissue, not just #kidneys. 🏥 Source: Orphanet Journal of Rare Diseases, 🔗 in bio.
Oliver needs specialists in Kidney, GI, Eyes, Nutrition, & Feeding Therapy. Which specialists does your #RareDiseaseWarrior rely on?
Cystinosis was first described in 1903 by Swiss biochemist Emil Abderhalden. The #history of this disease 100+ years old! 📜 Source: Orphanet Journal of Rare Diseases, 🔗 in bio.
What've we learned in that time that helps your #RareDiseaseWarrior kiddo, and what do you hope the next century brings?
Men with #cystinosis often have low testosterone & infertility. (Orphanet Journal of Rare Diseases, 🔗 in bio) 🧑🤝🧑 This means it is unlikely that Oliver will father any children in his lifetime.
Parents how do you approach these types of tricky topics with your #RareDiseaseWarrior and at what age?
#ShareYourRare We often use analogies: "leaky bucket" kidneys, or "Oliver's cells don't take out the trash". Though these are non-scientific it can be helpful to introduce complex issues to those who want to understand. What are your go-to's when explaining what your #RareDiseaseWarrior faces?
The girl I used to be in 2017 would be flabbergasted if you told her she would be a mom one day let alone to a #rarediseasewarrior
I still think of her often. But now I wouldn’t have it any other way. I have @OliverAgainstTheOdds and that is everything.
Blue tshirt with Rare but Real text
Black cotton reusable bag with Rare Disease Warrior design
White ceramic mug with Rare Disease Warrior design
Cream Tshirt with Rare Disease Warrior Design
Get ready for #RareDiseaseDay on Friday 28 February, but be quick! Merch delivery 48-72 hours. We are celebrating our Rare Disease Warriors!
Merch - 📲 amend.teemill.com/awareness/
Donate - 📲 www.amend.org.uk/fundraisers-...
#rarediseasewarrior #showyourstripes #supportasmallcharity #AMENDTeeshop
![Das Bild zeigt erneut die bunt bemalte Zebra-Statue und dieselbe Person, die sich darauf lehnt, diesmal vor einem Hintergrund mit einer Aussicht auf eine Stadt. Darüber steht der Text „Auflösung von gestern:“ mit einer Erklärung: „‚Wenn du Hufgetrappel hörst, dann denke an Pferde und nicht an Zebras.‘ Eine Redewendung, die in der Medizin deutlich machen soll, dass häufige Krankheiten wahrscheinlicher sind als seltene, auch wenn die Symptome eines Patienten zu beidem passen würden. […] Das Zebra ist so zum internationalen Symboltier für die Seltenen Erkrankungen geworden.“ Das Datum „19.10.2023“ und der Hashtag „#selteneerkrankungen“ sind ebenfalls eingeblendet, begleitet von weiteren illustrierten Zebras und der Botschaft „Teile Wissen, unterstütze die Seltenen“.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:suzbep6ohwfieysb35pxwpqr/bafkreihkxvcskrytvgitrodadedpecjouxdt4vk75ij2iul4dbswqh6iuq)
Das Bild zeigt erneut die bunt bemalte Zebra-Statue und dieselbe Person, die sich darauf lehnt, diesmal vor einem Hintergrund mit einer Aussicht auf eine Stadt. Darüber steht der Text „Auflösung von gestern:“ mit einer Erklärung: „‚Wenn du Hufgetrappel hörst, dann denke an Pferde und nicht an Zebras.‘ Eine Redewendung, die in der Medizin deutlich machen soll, dass häufige Krankheiten wahrscheinlicher sind als seltene, auch wenn die Symptome eines Patienten zu beidem passen würden. […] Das Zebra ist so zum internationalen Symboltier für die Seltenen Erkrankungen geworden.“ Das Datum „19.10.2023“ und der Hashtag „#selteneerkrankungen“ sind ebenfalls eingeblendet, begleitet von weiteren illustrierten Zebras und der Botschaft „Teile Wissen, unterstütze die Seltenen“.
Heute weiß man, dass alleine in DE 4 Millionen Zebras leben und ich bin eins davon. 💪🏻
#RareDiseaseWarrior
#RareDiseaseAwareness
Ja und nein. Ich sehe wieder wie vorher auf diesem Auge. Die Ursache und Diagnose war NMOSD.
#rarediseasewarrior 💪🏻
www.amboss.com/de/wissen/ne...
