Hearing Loss

What Is Usher Syndrome?
Usher Syndrome is a genetic disorder that causes progressive hearing loss, vision loss or retinitis pigmentosa. Not to mention balance problems. Last but not least, even though there is no cure available, there are treatments available that focus on managing symptoms through hearing aids and cochlear implants, vision aids, rehabilitation, and early intervention, while research explores gene therapies and drugs to slow degeneration.

What Is Brittle Bone Disease?
Brittle Bone Disease, or Osteogenesis Imperfecta (OI), is a genetic disorder that causes people to have fragile bones that break easily due to faulty collagen, as well as leads to frequent fractures, deformities, and other issues like blue eyes, short stature, and hearing loss. Thankfully there is treatment for people who have this disease that focuses on managing symptoms, preventing fractures, and improving mobility through physical and occupational therapy, low-impact exercise such as swimming or tai chi, and braces. Not to mention, mobility aids like walkers, or wheelchairs, sometimes surgery to put in rods to help stabilize long bones, and medications like bisphosphonates to increase bone strength.

Waardenburg Syndrome
Waardenburg Syndrome (WS) is a genetic condition that causes people to have pigment issues such as white forelock, different eye colors, skin patches, and sometimes hearing loss or bowel problems. There is no cure, but symptom management is key for people with this syndrome to have success in life. Some examples of early intervention for this syndrome include aids, cochlear implants, sun protection for skin and eyes, specialized diets/surgery for bowel issues, and genetic counseling.

Hello all. I have had a lifetime of health issues that have always been assumed to be rheumatological but I never fit all tne criteria. This past year, I have had a new "flair up" with very concerning symptoms including sensorineural hearing loss, ruptured ear drum, visual and visual field disturbances, high ocular pressure, new migrane activity, broken wrist and ankle with delayed healing, gastroparesis, internal rectal hemroids, hernia and more. I am currently seeing specialist who agree this is complicated. Looking into EDS was recommended to me, and I was absolutely shocked to see that almost WORD for WORD and symptom by symptom, I literally fit almost all the 13 subtype. I'm so scared and I'm so confused! How can I fit all of to that large of a degree. I have a wrist surgery in 2 days for a fracture that happened in January and I'm absolutely scared to go under anesthesia now or be cut on after ready the cardio and vascular forms, which again I fit criteria heavily. I have no had an echo but my heart rate and BP are having difficulty being controlled on beta blocker. Can anyone give adive or experience with the possibility of having multiple subtype and if I am putting myself at risk having this surgery. I literally don't even know where to go from here.

I have Functional Nuerological Disorder which causes non-epileptic seizures, paralysis episodes, blackouts, walking weakness/instability, muscle spasms, vision impairments, hearing loss, tics, and more.
Would you recommend a service dog?
Already have 55 lb St. Berdoodle (female) with much potential. She is well trained and alerts to my symptoms and seizures, as well as responding through DPT.

I have Functional Nuerological Disorder which causes non-epileptic seizures, paralysis episodes, blackouts, walking weakness/instability, muscle spasms, vision impairments, hearing loss, tics, and more.

Would you recommend a service dog?

Already have 55 lb St. Berdoodle (female) with much potential. She is well trained and alerts to my symptoms and seizures, as well as responding through DPT.

Hi, my name is Farhat. I've been diagnosed with conductive hearing loss and hyperacusis

#MightyTogether

Hello. This is the first time I've posted about myself. I was diagnosed with ADHD-Combine two years ago along with social anxiety disorder, avoidant personality disorder, PTSD, and OCPD. I also forgot hearing loss and I have bilateral hearing aids. I am struggling to keep a routine for myself. I make one and it works for a couple days. I never write them down etc. I have found that checking things off works for me. Can someone tell me what is a good digital to do list or tool that I can use in my day to day?

Hi, my name is SomeLady. I'm here because I have a few chronic illnesses and I'm looking for encouragement and support.
#MightyTogether #KidneyDisease #UlcerativeColitis #HearingLoss