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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
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
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
Types of Usher Syndrome. A cut-out of a hand holding a DNA gene between the finger and thumb. Text “Usher syndrome comes in 4 types & each type has its own subtypes! Why? Because each subtype is tied to a different gene mutation that causes Usher syndrome. Note: Type 4 is newly identified.”. Slide describes Usher Syndrome Type 1 with subtypes and genetic mutation USH1B (MYO7A), USH1C (USH1C), USH1D (CDH23), USH1f(PDH15), USH1G(SANS), USH1J (CIB2). Symptoms:  Profound loss (little to no hearing) at birth. Decreased night vision becomes apparent during late childhood & progresses to severe vision loss by mid-life. Issues with balance tends to be present at birth. Slide describes Usher Syndrome Type 2 with subtypes and genetic mutation: USH2A (USH2A), USH2C (ADGRV), USH2D (WHRN). Symptoms:  Mild-severe hearing loss at birth, some may experience progressive loss during adulthood. Decreased night vision becomes apparent during late teens & progresses to severe vision loss by mid-life. No issues with balance.
September 19, 2025 at 1:42 PM
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
What happens to balance in Usher syndrome? Let’s find out what keeps us steady!

Follow along & share to help spread awareness of this rare condition impacting only approx 250 people in Ireland.  💚

#UsherSyndrome #Balance #Vestilbular #RareDisease #USHDay2025 #SpeirGorm
 A cut-out of a young toddler walking. Text reads “What happens to balance in Usher syndrome? “.  A image of a toddler walking, appearing unsteady and holding on to an adult behind them, towards a sofa with an adult behind them. Text reads “The vestibular system helps us maintain balance. It includes the semicircular canals in the inner ear, which detect movement. Tiny hair cells and fluid in the canals send signals to the brain, helping us stay steady.”  Text reads “In USH1, the tiny hair cells in the vestibular system are often compromised at birth. This can cause delays in sitting, crawling, or walking in children. The vestibular system also works with the eyes to maintain balance. As vision loss progresses, balance difficulties may become more noticeable.”. Underneath is a cut-out of a woman with one hand outstretched and the other on her head as she appears unsteady. Text in circle reads “Not everyone with Usher syndrome has balance problems. Many people adapt naturally over time. Babies and young children with USH1 may benefit from physiotherapy or vestibular rehabilitation.”. Behind the circle are several icons representing balance.
September 11, 2025 at 2:13 PM
usherireland.org
What happens to hearing in Usher syndrome?

Dyk: Usher syndrome is the leading genetic cause for deafblindness, yet people with this condition have normal vision at birth!

(1/2)

#RareDisease #Speirgorm #HearingLoss #Deaf #USHDay2025
A cut-out of a girl wearing a cochlear implant. Text in image reads, “What happens to hearing in Usher syndrome?”. Text on the top reads “Inside the inner ear is the cochlea.” and “It’s filled with thousands of tiny hair cells.” with an outline of a cochlea in between. Below is a speech bubble with text “These cells turn sound into signals the brain understands and hear.” and a cut-out of a man listening with a hand behind his ear. Text in image reads “In Usher syndrome, many of these tiny hair cells are damaged from birth or over time. This is called sensorineural hearing loss. The more damage, the greater the hearing loss.”. Below is a graphic of healthy and damaged hair cells. In text boxes the following text “Some people are born with little to no hearing (often in USH type 1). Some people are born with mild to severe hearing loss (often in USH type 2). Some people are born with no hearing loss (often in USH type 3 & 4). For some with USH type 2 and for all those with types 3 & 4, hearing loss is progressive.”.
September 2, 2025 at 1:54 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
(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
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 boy looking through a magnifying glass with one eye. Text reads, “What is Usher Syndrome?” A background wallpaper of several eyes, ears, and person icons. Text in image reads, “Hearing loss - mild to profound, at birth or later”, “vision loss - normal at birth, progressive loss leads to night-blindness & tunnel vision” and “balance - some, but not all, experience issues with balance” . There is a plus symbol in between each text box. Above an image of the earth, text reads, “How Rare? Estimated around 12,000 babies are born with Usher syndrome each year. Possibly up to 700,000 people worldwide are living with USH.” Alongside several icons of DNA strands, text reads, “Currently, there are four types of Usher syndrome with many subtypes. Each type is usually distinguished by the severity of hearing loss at birth & onset of vision loss. Only genetic testing can confirm Usher syndrome.”
August 28, 2025 at 10:30 AM