Losing Vision Gaining Life – Stargardt’s

Losing Vision Gaining Life – Stargardt’s


20 thoughts on “Losing Vision Gaining Life – Stargardt’s

  • I just found out 2 weeks ago I have it.. I have my good and bad days. I think what bother me most it that im very activate and the things I love doin the most I cant do as well or not at all but I accepted the fact i cant do anything about it I just pray it dont get any worse.. I appreciate ur positive attitude it gives me something to look forward to.

  • I soon understand, I'm finding my new normal and have thought about voting b/c I'm finding my voice yet holding on to so e secrets and insecurities. My faith in God keeps me going as well as my family, be blessed. ..

  • hey i also have stargardt, how is school for you? because i had to give up school:( and i don;t know what to do now what job should i go for:( good luck with your dream 

  • I can relate a bit. I went from having 20/20 vision to being considered legally blind within 5 months. All this journey started last year but now I am to go through this life journey ahead of me

  • I'm 24 and losing my vision. I feel for you. I think what now? And why me!?! Just when i think life sucks something worse happens to remind me it could be so much worse. Much love and support. Your friend.


    A Phase I/IIa Dose Escalation Safety Study of Subretinally Injected StarGen, Administered to Patients with Stargardt's Macular Degeneration.

    The purpose of this study is to learn about a new gene therapy that may help patients with Stargardt's Macular Degeneration (SMD).  This is the first study that aims to treat Stargardt's disease by gene therapy.  The study investigators want to find out whether it is safe for use in humans.  The gene therapy is given by a surgical injection underneath the retina of one eye.  The eye with worse vision will receive the gene therapy.  

     Eligibility criteria: 

    Adults 18 years and older 
    Must have 2 documented mutations in the ABCA4 gene, which is the gene linked to Stargardt's.  Genetic testing must also be completed within the subject's family (one or both parents or siblings) to confirm the affected subject's results.  
    Vision must be no better than 20/200 in the eye that will receive the gene therapy 
    Good general health 
    This study will occur at the Casey Eye Institute in Portland, OR.  Participation in this study will last for at least one year with an option for long-term follow-up.  There are 11 required study visits in the first year of the study.  Each study visit will involve vision function tests, dilated eye exams, and blood draws. 

    For more information, please call Maureen at 503 494-3795 or email.

    Principal Investigator: 

    David J. Wilson, MD
    Casey Eye Institute
    3375 SW Terwilliger Blvd.
    Portland, OR 97239
    eIRB#: 7240

  • I don't have the same as what you have but I'm blind I'm 15 and I have cone dystrophy nystagmus photophobia I'm colourblind short sighted and I'm completely blind in my right eye and I have nearly no vision left in my left eye and it is still getting worse recently I when't to the eye doctor to find out why and they did the tests they normally do with me and said that there was something wrong and they think there is something else going on with my eyes but they couldn't check my retainer in the back of y eye because they couldn't put the drops to enlarge my pupil in because they found out the pressure in my eyes was over 3 times higher then normal and it would be to dangerous so they gave me some eye drops to take every night for a wile to try and bring the pressure down then I have to go back so they can try and see what's wrong but I'm still loosing my sight and it still doesn't stop me from doing some of the things I enjoy like horse ridding and stuff like that and I would like to get to know more people with vision loss as I don't know hardly any one like me oh and BTW this isn't my account it's my sisters she just lets me go on it sometimes as I'm not very good with making accounts and stuff lol

  • To everyone here, i really feel for all of you. I am 40 now and have had Stargardt's for over 30 years. I have my good and bad days. I was lucky in that I have not lost more than about 25% of my vision. I really want to offer encouragement. One thing I want to let you all know about is a free download program for windows (not sure for mac) that can help you read so you can stay informed and feel productive. It is called NaturalReader. I have version 10, but, there are newer versions now. All you have to do is download, install, and you can use instantly. To use it, have it running in the background or on your screen. Then double click on a paragraph in word or on the internet web page and hit control + f9 and it will read it for you.

    I am in the science field and use it to help me read papers. It is a great tool.

  • Hi Nysha,I am from Bosnia and Herzegovina,and I am 17.I have Startgardt disease.My current vision is on left eye 10% and on right eye 20%.I have few question for you:
    What is your vision now,do you can read?
    Do Startgardt disease leads to blindness?
    How is big that stain,creat in central vision??
    Do you know something new about startgardt???
    Thank youuu!!! 😉

  • I'm 11 and I have lost center vision in my left eye. If you have eye problems with vision, you cannot be a policewoman, good bye dream.

  • You are great 😉 I also have stargqrdt disease,my vision is 20/200 and I'am 18.I think,people with stargardt musn't consider yourself diferent of other people who have normal vision.For me the most important iare people with startgardt never be blind,you have ever your perefrly.vision and you can all you want but you must know our life is little diferent 😉 THANKK YOUU 😉 <3 NEVER GIVE UP AND LOSE HOPE 😉

  • hearing your story have given me a strong confidence to also
    share my story as well,have been in this secret all my life and
    watching few videos online have made me realised that i am not alone in
    all what am going through right now,i was born with stargardt and
    have been living like this since i was an infant,and have been in alot
    of pain and hardship both in school,relationship and my personal lifei
    am 27years old now and i still live with it,i will soon also share what
    am going through and i hope at your free time you listen and get back to
    me……..am glad i found your video,at least i thought i was in it

  • If only you can see how pretty you are. Keep dreaming big I know you will get better. I don’t care what anybody says you will get better. I will pray for you. I will continue to pray for you.

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