star1
star2
star3
Nonprofit Organizations
Enlarged Vestibular Aqueduct
Pendred Syndrome Society
ZENPE設立記念イベントのお知らせ
参加申し込みWhat is ZENPE?
Know your illness, know yourself.
We are a group that works to create the "ideal state" that we want to be in the future.
star1
star2
star3
star4
star5
star6
star7
There are large individual differences in this disease, so it is important to "create your own instruction manual."
A disability is not something to overcome, but something to live with for the rest of your life.
That is why we want each person to live the best life possible, in their own way, with what they were born with!
It is with this idea in mind that we work.
About Enlarged Vestibular Aqueduct and Pendred Syndrome
Making disease information easy to understand by making the difficult easy to understand
When you search, all you find are difficult papers aimed at doctors…
Having just been diagnosed, you must be feeling even more anxious.
We want to change the current situation, here and now.
ZENPE was started with that idea in mind.
We provide easy-to-understand information under the medical supervision of Dr. Matsunaga, a leading authority on Pendred syndrome research.
Enlarged vestibular aqueduct
A congenital inner ear malformation that causes sensorineural hearing loss due to the enlargement of the vestibular aqueduct. Although symptoms vary from person to person, the following three main symptoms are observed:
- Fluctuations in hearing
- Progressive hearing loss
- Dizziness
Pendred Syndrome
Enlarged vestibular aqueducts and Mondini malformation of the cochlea are often observed on both sides, and in addition to the symptoms of enlarged vestibular aqueducts, goiter is often observed from around the age of 10. In some cases, hypothyroidism is also present.
Sensorineural hearing loss
This type of hearing loss is caused by problems with the cochlea or auditory nerve.
It is not just a matter of not being able to hear soft sounds well, but can also be accompanied by the following characteristics:
Announcements and latest information
The problem with this disease
10,000-20,000
0
Little
Non
*Morton CC, Nance WE. N Engl J Med 18;354:2151-64, 2006
Visionビジョン
The future ZENPE aims for.
Aiming to solve problems and make everyday life easier for patients and their families.
Content Introduction
About the disease
Download Service
magazine
Become a member
Donate
Member-only web magazine
Contains a wide variety of articles, including personal experiences, interviews, and grants related to the ear.
join us?
Want to become a member?
Turning small voices into loud voices
Because this is a disease with a small number of patients, we believe that by coming together as members, we can turn small voices into loud voices and raise awareness of the existence of a little-known disease in society.
Five Membership Benefits
Membership-based web magazine ZENPE.mag subscription
Open chat for patient families only
Useful data download free
Advance announcement of clinical trial information by consulting physician
Participate in paid events at member prices
Introducing the management team
Value both perspectives
ZENPE is an organization run by people with enlarged vestibular aqueduct and Pendred syndrome and their parents. We value the perspectives of both people with and their parents and provide what they wish existed.