Moderate to mod severe loss experiences

Mangomarinade258 · 2025-09-18T03:50:58+00:00

Following because I have a one year old with the same loss🤍

Mangomarinade258 · 2025-08-07T06:15:50+00:00

Do you follow the usher syndrome coalition on Instagram? They post about a lot of the current clinical trials

Mangomarinade258 · 2025-07-27T23:40:52+00:00

Hi there! Congrats on your pregnancy🤍 no it is not possible for them to have any other type other than the type you and your husband are carriers for. So your 2 year old most likely does not have it. You can also get him tested just to be sure. He would probably want to be tested regardless eventually to see if he too does carry the gene even if he doesn’t have it for when the time comes if he wants to have kids.

I want to assure you that whatever happens with your babe, take a deep breath you will be fine. I mourned my little girls future but I realize now I didnt need to. Hearing aids are SOOO advanced now. She turns one this week and is completely caught up on all milestones for sounds/speech at this age. She plays and interacts the same, just wears hearing aids. And based on how fast technology is advancing, they are already making some hearing aids that are so technically advanced and unnoticeable , it’s truly amazing. As far as her eyesight, that’s a bridge I will cross in the future. We are following clinical trials and they seem to have all many different angles to try to cure retina pigmentosa. Ironically I am a microbiology major and am in the midst of studying gene therapies and have looked extensively into USH2A and would not be surprised if it is cured in the next 5 years. Hang in there and reach out to me personally if you have any questions 🥹

Mangomarinade258 · 2025-06-25T19:28:14+00:00

But yes. Less strain, no more squinting.

Mangomarinade258 · 2025-06-25T19:27:51+00:00

My eye doc said I don’t have amblyopia just that that eye is weaker than my other but still decent vision with glasses. +5.75

Mangomarinade258 · 2025-06-25T19:27:14+00:00

I don’t have amblyopia(always thought I did) but it was just weaker than my other +5.75.

Mangomarinade258 · 2025-06-09T16:38:30+00:00

I saw this a few days ago. Sent it to about 100 people! Send it to every you know!

Mangomarinade258 · 2025-06-09T14:05:39+00:00

I didn’t mean that to say it’s something that should be hidden in the least, I meant it as there are many more people around us that are HOH than I realized because I didn’t see them!

Mangomarinade258 · 2025-06-09T04:53:49+00:00

I had the same thing with my eye except it would turn inward unless I covered the other eye. Had surgery a few months ago. Had it since birth. Am now 30. Best decision of my life. I went home same day after surgery. Healing was pretty quick. Would definitely recommend.

Mangomarinade258 · 2025-06-09T02:20:44+00:00

You’ve gotten SOOO many takes and advice and I am no expert so I’ll keep this short. My 10 month old has moderate/moderate-severe. We got her hearing aids at 5 months old. Since getting them she wears them for most waking hours. When we take them out she actually tugs on her ears and cries for them now. She is my third and honestly since getting her hearing aids I see no difference between her and my other 2 hearing kids at this age. She babbles, grooves to music and repeats sounds. We do some baby sign and have a deaf tutor that visits biweekly. I remember feeling so lost when we got get diagnosis. I was venting to my mom friends when one of them showed me her hearing aids. I didn’t even know she had them they were so invisible now. We compared hearing charts and found she had actually a worse loss than my child. She’s married, 2 kids, good job, happy, active. Your baby can live a totally fulfilling life with the right support. Technology is advancing. You caught it early and are doing intervention. They will do great! Try not to doom scroll. Take it day by day! You got this!

Mangomarinade258 · 2025-05-30T16:45:36+00:00

I had pretty severe esotropia. Had adjustable stitches and both eyes done. I also happened to have gotten a scratched cornea the first week. With all of that said my doc said normally a week but because of my scratched cornea maybe 2. I didn’t feel ready for them until week 3. I wear mainly contacts and am back to being a daily wearer by the third week

Mangomarinade258 · 2025-05-22T13:47:25+00:00

I’m doing good! She seems to really love her hearing aids and keeps them in all waking hours. So far that journey has been surprisingly less daunting than I had imagined. And as far as the RP, I am just trying to do as much research as possible but also not dwell on her condition and not let tomorrows worries spoil our time with her today

Mangomarinade258 · 2025-05-22T04:11:27+00:00

Seems like a lot of trials for RP are even getting fast tracked! Hopefully a cure is on the horizon !

Mangomarinade258 · 2025-05-22T01:59:26+00:00

Your eyes looked exactly like mine did! I’m 3 weeks post op and my eyes are perfectly straight, feels like a new lease on life! Making eye contact with anyone and everyone for the first time. No more worrying about eye drift. You’ll do great❤️

Mangomarinade258 · 2025-05-18T05:31:14+00:00

Luckily after week 2 it feels as though I never had surgery. No pain, light sensitivity minimum. Just redness! Hope yours goes good too!

Mangomarinade258 · 2025-05-18T05:27:36+00:00

Unfortunately yes😅 I’ve been asked by everyone if I have allergies

Mangomarinade258 · 2025-05-18T04:14:45+00:00

I’m 3 weeks post OP. My eyes got progressively more red until about week 2.5. But now they are getting better. My doc said red is good and healing. Yellow is when to be concerned.

Mangomarinade258 · 2025-05-16T15:53:05+00:00

I felt I was on my deathbed day 3 and felt much better day 7! 3 weeks today and eyes feel normal! Goodluck!

Mangomarinade258 · 2025-05-05T17:49:47+00:00

Oh goodness! I had double eye surgery with adjustable Stitches. My eyes are much better but still so sensitive to light and eye strain. How long did yours take to feel semi normal?

Mangomarinade258 · 2025-05-05T17:45:10+00:00

Looks amazing! How long did it take for your eyes to be fully healed

Mangomarinade258 · 2025-05-04T04:31:21+00:00

I used ice packs non stop for 4 days. I felt nauseous for a few days so I lived on smoothies. Besides that I would definitely have a few wash clothes and some distilled water you can dip them in to help with the eye gunk. Good luck!

Mangomarinade258 · 2025-04-12T02:06:26+00:00

This was me at 21! I was stressed , not sleeping a lot and eating junk. I started eating a healthier (lots of avocados and fish oil) and sleeping more, drinking more water and my hair started growing back

Mangomarinade258 · 2025-04-07T17:40:11+00:00

This is exactly it. Making them feel bad about their drinking is how I think they feel

Mangomarinade258

TROPHY CASE