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Stargardt Disease


Okrahomer

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15 minutes ago, Okrahomer said:

We found out today that our brown-eyed beauty, our vivacious and sweet 12-year old granddaughter has Stargardt Disease.  We are so worried for her.  The prognosis (rapid loss of central vision) is distressing.  If anyone has knowledge about this disease, please do share.

I pray for understanding.  I pray to know how best to help and support her.  I pray for her parents who are so deeply sorrowful right now.  I pray for her doctors, that they will be guided toward known and as yet unknown therapies that will help her — and all who struggle with this disease.  And most of all, I pray for this little soul who has been such a blessing to us.  May she be strengthened against the challenges that lie ahead, and may Our Heavenly Father bless her with a deep sense of His love and protection.

I'm so sorry to read this, I know being a grandma of three, how very dear they are and worry all the time for them. She is fortunate to have such loving grandparents and family. I read through most of the link you shared, but have no experience with this and have never heard of it. I hope before it's worse that they can find some cure or something making it so she will be able to function in every day life. God bless Okrahomer. 🙏

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3 hours ago, Okrahomer said:

We found out today that our brown-eyed beauty, our vivacious and sweet 12-year old granddaughter has Stargardt Disease.  We are so worried for her.  The prognosis (rapid loss of central vision) is distressing.  If anyone has knowledge about this disease, please do share.

I pray for understanding.  I pray to know how best to help and support her.  I pray for her parents who are so deeply sorrowful right now.  I pray for her doctors, that they will be guided toward known and as yet unknown therapies that will help her — and all who struggle with this disease.  And most of all, I pray for this little soul who has been such a blessing to us.  May she be strengthened against the challenges that lie ahead, and may Our Heavenly Father bless her with a deep sense of His love and protection.

I am so sorry to hear that.  I got hit with a vitreous detachment in my right eye a year ago, not dangerous thank goodness and all that is left is one large floater that sits for a bit in the center of my eye and blurs my vision about 10% of the time, so no big deal, but I have been shocked at how insecure that little distortion can make me feel at times.  Losing your full central vision over time, must be shattering and for it to start to happen right when she is getting hit with the chaos of adolescence.  You must be heartbroken.  I understand your worry.  

Have you looked to see if there are any support groups online for it?  The best way to find out how to help is to ask those who are familiar with living with it, preferably those who have it themselves, but caregivers too certainly, especially for children. I have found them much more helpful with the day to day stuff than doctors or medical clinic websites.

Edited by Calm
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I'm so sorry to hear this! I haven't heard of that disease. Praying for you all. 

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On 10/4/2023 at 9:26 PM, Calm said:

Have you looked to see if there are any support groups online for it?

We have.  And we have discussed these options with our daughter (the Mom).  They are reaching out now.  While the first few days following the diagnosis were difficult, the Mom and Dad are also feeling much more hopeful.

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3 hours ago, Okrahomer said:

Thank you!  After a few days of reflection and study, we are feeling more hopeful.  There are treatment options, and there are some very promising clinical trials underway. 

Wonderful.

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7 hours ago, Okrahomer said:

Thank you!  After a few days of reflection and study, we are feeling more hopeful.  There are treatment options, and there are some very promising clinical trials underway. 

I'm so glad, and think there is a light at the end of the tunnel. 

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