Usher Syndrome Ireland
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usherireland.org
Usher Syndrome Ireland
@usherireland.org
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We are a volunteer-run charity supporting individuals & families living with Usher syndrome, a progressive condition causing hearing & sight loss. We also advocate for awareness, & fund research.
RCN:20206288 - www.usherireland.org - Ireland - Rare Disease
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usherireland.org
(continued) The different types of Usher syndrome - do you know them all?

Follow along & share to help spread awareness for #USHDay2025. 🩷

#UsherSyndrome #USH1 #USH2 #USH3 #USH4 #RareDisease #Genetics #DNA #Mutations
Slide describes Usher Syndrome Type 3 with subtypes and genetic mutation: USH3A (CLRN1), USH3B (HARS). Symptoms:  Normal hearing at birth, progressive hearing loss typically begins during adolescence. Vision loss begins during early adulthood leading to severe vision loss by mid-life. Balance issues can vary. Slide describes Usher Syndrome Type 4 with subtype and genetic mutation USH4 (ARSG). Symptoms:  Normal hearing at birth, progressive hearing loss is typical during adulthood. Vision loss begins during adulthood. No known issues with balance. *USH4 is a recently discovered type with more research needed to learn more about this type.  Cut-out of child in a superman costume shouting into a megaphone. Text, “Repost. Follow. Spread USH awareness by reposting the slide with your type! We’ll continue our deep dive into Usher syndrome as we approach #USHDay2025 this Saturday, 20th September.”
September 19, 2025 at 1:42 PM
usherireland.org
(2/2) Are there other symptoms in Usher syndrome? Let’s explore what researchers are asking! Have you experienced any of these?

#UsherSyndrome #RareDisease
Text reads “Does Usher syndrome also affect the sense of smell? Some studies suggest it might, though more research is needed.”. Underneath the text is a cut-out of a woman holding flowers close to her nose. Text reads “Sometimes the main symptoms of Usher syndrome leads to secondary conditions like cystoid macular edema, cataracts, headaches, or low mood. These aren’t direct symptoms, but they can arise as part of the bigger picture of living with Usher syndrome.”. Several icons of eye drops, headache, and low mood can be seen. Text reads “Help spread USH awareness by reposting & following us. We’ll continue our deep dive into Usher syndrome, its symptoms & more in the lead-up to #USHDay2025 on 20th September.”
September 15, 2025 at 8:33 PM
usherireland.org
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September 12, 2025 at 7:01 PM
usherireland.org
(Post 2/2) What happens to vision in Usher syndrome? Let’s take a look in today’s post!

Follow along & share to help spread awareness. 🩷

#USDay2025
#UsherSyndrome #UsherSyndromeAwarenessDay #RareDisease #RP #RetinitisPigmentosa
Text “Vision loss is part of all types of Usher syndrome. When it starts and how it progresses can depend on the type and even then, it’s different for each person, even within the same USH subtype. Everyone’s experience with vision loss is unique. A range of tools, technology, and supports can help, depending on individual needs.”. Text is in a circle on a background showing icons of guide dog, canes, braille, mobile phones with magnifiers. Text “Repost. Follow. Help spread USH awareness by reposting and following us. We’ll be diving deeper into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.”. A cut-out of a man making a heart shape with his hands.
September 4, 2025 at 8:45 AM
usherireland.org
(2/2) What happens to hearing in Usher syndrome?
In the background are several icons of hearing aids, both bte and ote processors (for cochlear implants) and hands signing. Text in circle at front reads “Some people use hearing aids to access sounds and speech. Cochlear implants can also support access to sound and speech when hearing loss is severe. For others, sign language is a primary and preferred way to communicate.”. A cutout of a girl and a boy looking through their hands making a heart shape. Text in text box reads, “Repost. Follow. Help spread USH awareness by reposting and following us. We’ll be diving deeper into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.”.
September 2, 2025 at 1:54 PM
usherireland.org
Do you know what is Usher syndrome? Here’s a simple intro to get you started!

Over the next few weeks, we’ll take a deeper dive into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.

Follow along & share to help spread awareness. 💛

#RareDisease #SpeirGorm #Awareness
A cut-out of a young girl looking through her hands making a heart shape above a text box. Text in the text box reads, “Repost. Follow. Help spread USH awareness by reposting and following us. We’ll be diving deeper into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.”.
August 28, 2025 at 10:30 AM