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Alison

@rarezebramom.bsky.social

🦓HAE Caregiver🦓PI Mom🦓Mom of twins ♥️Lyme warrior💚 #🟦

22 Followers  |  67 Following  |  4 Posts  |  Joined: 15.02.2025  |  1.3289

Latest posts by rarezebramom.bsky.social on Bluesky


The below posts are fromy husband @rarectadvocate.bsky.social - he's a pretty cool guy who posts info about a different rare disease a day. The below posts are about Specific Antibody Deficiency aka. SAD and how they relate to us .

04.04.2025 19:10 — 👍 0    🔁 0    💬 0    📌 0
Zebra Striped Ribbon

Zebra Striped Ribbon

If your child has a rare disease and attends a public school in the US, they are entitled to district support through a #504 plan or an #IEP. Ensure they receive the education they deserve.

You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness

01.04.2025 13:30 — 👍 2    🔁 1    💬 0    📌 0

His High School career started out with 2 days in school, followed by over 100 at home. He finally started back for 1 period a day 2 weeks ago, and still hasn't made it back every day.

You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness

01.04.2025 13:30 — 👍 0    🔁 1    💬 1    📌 0

Today's Rare Disease of the Day (RDoD) hits close to home. My son was diagnosed with #SAD - Specific Antibody Deficiency in 2024. Like many rare diseases, it was a long road to getting a diagnosis.

You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness

01.04.2025 13:30 — 👍 1    🔁 1    💬 1    📌 0
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Specific Antibody Deficiency (#SAD) is a primary immunodeficiency where individuals have normal antibody levels but can't produce specific antibodies, causing frequent respiratory infections.

Learn more: primaryimmune.org

You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness

01.04.2025 14:00 — 👍 1    🔁 1    💬 1    📌 0

Thank you :)💗.

01.04.2025 16:28 — 👍 0    🔁 0    💬 0    📌 0

8 days until Rare Disease Day 2025 ! I challenge everyone to find one person they know who has a rare disease and ask them about it. Their challenges, their joys and everything else in between - go !

20.02.2025 18:08 — 👍 0    🔁 0    💬 0    📌 0
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How many people do you know ?

15.02.2025 01:50 — 👍 1    🔁 0    💬 0    📌 0

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