Posts tagged ‘Usher Syndrome ‘




Usher Syndrome mother to be??

Many Deaf people tried to scare me to not get pregnancy. They said childbirth can cause my vision loss to get worse. I didn’t buy their stories. There is no proof of this. I have done research on the internet about Ushers Syndrome. This is not true that it affects the mother’s vision. That is no evidence. The devil wants to scare RP & US. I don’t believe that. I only trust God. I pray to God. I will not be blind after childbirth. I need my vision because I’m an artist and create jewelry. I love the beautiful colors!

I have a friend who has US like me. She asked me if would lose her vision during pregnancy and childbirth. I told her that’s not true. Other women are concerned about this. When my baby is with me. I will update my posts to let you know what’s going on. My friend asked me “Will your child be born deaf and US? No, my husband’s family have no deaf or blind. He does not carry the US gene. Both of my parents had to be carriers of the US gene. My husband’s DNA does not carry the US gene. My children will be carriers of the recessive genes. I believe my children will be hearing.

I found the article about usher syndrome mother. Usher’s Syndrome: Growing Up with a Deaf and Blind Mom A lady didn’t have hearing aids or cochlear implants. I did not want to be the same as her. I was concerned about not hearing my baby’s crying, cooing and other sounds. I could not hear with hearing aids. I thought I might know my baby crying with only a SA 101 Basic Remote Receiver with a light. I am not able to see the light when I am in the kitchen or bathroom. I did not want to trip over my small children because I can’t hear and not see well. My option was to get a cochlear implant so I would hear my baby’s crying, cooing and other sounds. I want to get a Graco imonitor Video Vibrating Baby Monitor or
Summer Infant Slim & Secure Handheld Video Monitor
. This is very important so I can know when my baby wakes up from nap.

My plan was to get cochlear implant before having children. It would be easy for me. God had a plan for me and my husband to have children after I received my implant. Thank god! I have a wonderful hearing husband. I don’t have to worry about not being able to hear anymore. It was gift from God.

1 comment January 31, 2010

Usher Syndrome

Information about Usher Syndromes. You want to know what is that mean. I am giving you the links.

Usher Syndrome

Information About Usher Syndrome

Night Blindness:

* Can’t see when coming in from bright sunlight
* Trips over things when light changes or light is dim
* Stays near a light in a dark room or at night
* Moves a speaker so light falls on face
* May express a desire to enter a room before it is darkened (movie theater, etc.)
* Avoids conversations in a darkened area
* When walking along a road at night, may appear to stagger or lose balance after an oncoming car has passed
* Has problems reading under some lights or in dimly lit areas

Glare sensitive:

* Squints and shades eyes in bright lights or fluorescent lighting – complains that the light hurts his/her eyes
* Likes to wear sunglasses even in buildings, but especially in bright sunlight
* Avoids participating in outdoor sports when the sun is very bright
* May appear awkward when exiting from the inside to the outside of a building (when faced with bright light)

Needs contrast:

* Has difficulty reading light copies or ditto copies
* Often spills when pouring liquids
* Can’t see stars at night

Restricted field:

* Startles easily
* Seems to hold eyes in a different direction when looking at some things (because of islands of vision)
* Turns head while reading across a page
* Uses finger to mark place while reading
* Can’t find small objects that have been dropped
* Fails to glance at another person’s handwaving from the side
* Bumps into people, tables, and chairs
* Stumbles on stairs and curbs
* Is quiet in a large group or may edge him/herself to one side when placed in a group
* Frequently fails to understand or misses groups instruction. Often relies on friends for information
* May appear to ignore others standing by his/ her side
* Prefers conversation at distances of 4 to 6 ft.

Problems with visual acuity:

* Holds book close to eyes, or bends to read
* Places face close to desk while writing
* Sits near blackboard

Balance problems:

* Can’t ride a bicycle
* Is considered clumsy
* Loses balance easily in the dark

Other:

* Frequently last in completing group activities
* Exhibits symptoms of anxiousness in new areas
* Often last to enter the room
* May have some repetitive behavior (seems to do the same things in the same ways, or continues to order the same things at lunch)
* May choose to stay home alone rather than be faced with the embarrassment of dealing with a new situation in the dark
* May appear unconcerned and may fail to fully participate in groups activities
* Frequently hesitates at the top or bottom of stairs (for orientation)
* Avoids walking or running in unfamiliar areas, especially when there is bright sunlight or when in a darkened area
* Appears to be constantly visually scanning a group

Hearing Loss in Usher Syndrome
Type l

* Children are born profoundly deaf or with just a little hearing in the low tones at loud levels of sound.
* Most but not all state that hearing aids help only a little or not at all.
* Some young children are showing benefit from cochlear implants.

The list is exactly what I was doing in the past. That is why my choice was a cochlear implant to hear. This helps my balance and I hear better. I plan to get bilateral cochlear implants after my childbirth.

My goal for Retinitis Pigmentosa can be treatment by stem cell research or retinal implant. Because I don’t want to get blind in the future and I admit that I don’t want to learn braille. I am so shy. I am still taking an Eye Vitamin supplements from Ocuvite® Lutein Eye Vitamin and Mineral Supplements . This is helping me postpone the blindness til late 40’s to 70’s. Now, I can’t take this supplement during pregnancy. That’s not good for my baby. I am taking a prenatal with DHA and Omega-3. The DHA with Omega-3 is helping promote health in our brains and eyes. After my childbirth I will take my preservision Eyes vitamin supplements again. I will never give it up.

Add a comment January 29, 2010

Early Life

I was born with Ushers Syndrome – a rare genetic disorder involving a profound loss of hearing, balance and vision problems.  I was diagnosed with the hearing loss at 18 months old.   I started wearing hearing aids by 2 years old and started going to school soon after that.

By age 3 I was miserable because I could not communicate.  My dad and mom talked to my teacher and they decided I needed sign language.   I learned very quickly to communicate with SEE “Sign Exact English”.   I attended to Pre-School for hearing impaired.

I started to learn ASL at age 10 half years old at deaf school.    I learned very quickly to communicate with ASL.  After my dad died of cancer until 5 months before I was diagnosed at 15 half years old with Retinitis Pigmentosa and that also meant Usher’s Syndrome.    I will not able to drive.  I became angry and depress.  My dad never know that I have it.

I will update my story about Usher’s Syndrome when I was in deaf school.   It was the worse memories ever I had.  The post is coming soon.

1 comment June 28, 2009

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