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Saturday, June 1, 2013

Introduction

I have been thinking about doing this for a while and finally decided to try it out.  I want to share my experiences as an individual with Stargardts Disease (a retinal degenerative disease which causes blindness.)  I want to reach out to others who are affetced by visual or other types of disabilities. 

My name is Heather.  I am 39 years old.  I am married to a wonderful man and have two beautiful daughters.  I live in a suburb of Boston, Massachusetts.

I was 9 years old when I was diagnosed with Stargardts Disease.  It took a long time for my parents to obtain this diagnosis.  They went to eight doctors before finally meeting the incredible one who recognized the issue.
Now that I have kids, I think about what they must have been going through during this search for an answer and my heart aches for them.  When one of my kids has an ear infection or a rash, I feel awful and want to help them feel better as soon as possible.  I can;t even imaging how helpless my mother and father must have felt.

Throughout my life, they have been my biggest supporters and advocates.  To this day they help me all the time but never make me feel dependant...which I appreciate greatly.

I could go n and on but will save it for another time.  Right now I just want to introduce myself and my new blog. 
Oh and the title..."Are you looking at me?" - this is a silly choice but it is the most frequent question I have been asked and it drives me crazy.  So why not add some humor? 

I want to send the message out to folks who are affected by visual disabilities that you can do nearly anything you want to..except fly planes, etc.  Losing your vision is tough but it is not the end of the world (which I admit to have forgotten at times.)
I am so blessed to have the most unbelievable family in the world.  I am healthy.  I have the 2 cutest kids EVER and a lot to be thankful for. Life is good.




8 comments:

Alanna said...

Hello Heather. My name is Alanna. I am 34 and was just diagnosed with Stargardts about a month ago and have been heartbroken ever since. I have 4 kids and I am devastated wondering what I will miss as they grow up and I am so afraid of my future. My vision is 20/40 now but I have had some symptoms already. I have been trying to memorize my kids faces. Can you see your daughters faces? I am so terrified. Maybe you can help me somehow. Thanks for making this blog. It is the first optimistic thing I've read about this disease.

Heather said...

Hi Alanna,
Thank you so much for writing. I hope I can be of some help to you!
I am so sorry for what you are going through.
To answer your question..YES I can see my daughters beautiful faces!! My vision is currently 20/200 in one eye and 20/300 in the other so I am considered legally blind. It is obviously challenging but I am able to care for my girls and pride myself on being a good mom. I have a lot of help from family.

I do stress out about being able to see my kids when they are in sporting activities or shows etc. Just last week my four year old had a sing-a-long concert at her school and I asked her teacher for seats in the front row. She was happy to reserve seats for me. Even in the front row its hard for me to see and I certainly can't see great detail. However, I used my iPad to video and could later watch it while zooming it. The good thing is that there are so many tools out there.
I use my iphone and ipad to help me magnify text, speak my text messages and more. I read books on my ipad and can increase the font size to quite large.

Its different for me because I have lived with this since I was a kid. So it is hard for me to imagine going from seeing well to starting to lose sight in your 30's. However, research has been moving along and it seems like the prospect of finding a cure or treatment is way more hopeful than even a few years ago.


I hope that we can continue to communicate and I can try to answer some of your questions or just be a person who understands.

Alanna said...

Thank you for getting back to me. I got great comfort in reading your response so thank you for taking the time to write me. It gives me the courage to think that maybe I can do this and it won't be so terrible. Growing up was hard enough for me with perfect sight. Elementary, high school, dating... it couldn't have been easy for you. I admire you already. :)
My story is pretty crazy. I just went to get some reading glasses last month because when I read, it gets blurry sometimes. The eye doctor sent me to the retinal specialist without telling me why. The specialist said I was his first Stargardts patient and that he was confident I'd be able to dress myself once my vision deteriorated. I was horrified. I have another appointment set up with someone in Salt Lake who specialized in macular degeneration. I hope he is more optimistic about my future. I live in Sandy, a place outside of Salt Lake City Utah. I don't have family here, but I have a lot of friends who I know will help me. I just don't want to be a problem for anyone. I am afraid to ask people for help.
I worry about losing my license and independence. My kids are 12, 9, 5, and 3. The oldest is a girl and the rest boys. They keep me busy and have so many activities. I have read that some people can drive just not at night. Do you drive at all? Do you get headaches when you read on your laptop? Do you see color? Is there a black circle in the middle of your vision or is it just blurry? I don't mean to be so nosy, I am just wondering what is to come and when. No one seems to be able to answer a lot of my questions.
Like I said before, I already admire you. I got tears in my eyes as I read your last paragraph in your post about how you can do almost anything you want to do even with a vision impairment. I needed some hope and I must thank you for giving me that. I am looking forward to getting to know you better and reading more of your posts. Give your girls a hug from me and thank you again. :)
Alanna

Heather said...

I was just saying to my mom the other day that I wasn't sure how people would respond to this blog but even if I helped one person I would be happy I did it. I am glad we connected! First of all, that "specialist" you saw sounds like an ass. He should keep his mouth shut if he has never dealt with Stargardts before. I am mad at him for you. And I am very glad you are go0ing to the other specialist.
What he said was so ridiculous!! I have never had a problem dressing myself.
And even if my vision gets worse, I will come up with a way to do it.
I don't know if anyone can tell you how bad your vision might get and at what rate. It is probably different for everyone. So it is entirely possible you will not see a huge change for a long time. That is definitely something to talk to the new doctor about.

I can see color. Sometimes I have trouble discerning color if I am looking at something small but it has not become a major issue. I do not see a black spot...its just kinda blurry. Its hard to describe how I see but basically if I look directly at something, I can't see it, so I look to the side of it or above it. I do this automatically. I use the zoom feature on the computer and set the monitor brightness to dim. My eyes get tired if I sit at a computer all day which I did for some of my jobs in the past. I would get headaches often.
Apple products are amazing! I have an iPad and an iPhone and both have excellent accessibility features for people with low vision.

I totally understand about the asking people for help thing. I have always been pretty independent. For many years I lived in the city where I could get anywhere using public transportation. (I have never been able to drive...Imagine how that felt at 16 yrs old!) Now that I live in the suburbs, I do need to ask people for help a lot. It is something I struggle with... and I worry about as my kids get older how many activities they will need to get to etc. I can get myself in a rut if I think about it too much so I try to remember to take things day by day and know that I am no less of a person or mom just because I have poor vision.
I am sure your friends will be understanding and willing to help you. If this was happening to one of your friends, think about how you would want to help.

But try not to jump too far ahead of yourself. See what the specialist who knows what he is talking about has to say.

That other guy should be slapped in the face.

I am actually heading out to dinner with some friends so I need to go get ready but I wanted to make sure I got back to you.
Talk to you soon!
Heather

Heather said...

I hope my last comment did not come across as too angry or harsh. I am just tired of hearing some of the ridiculous things doctors say sometimes.
When I was a kid and my parents were trying to figure out what the issue was with my vision, they got some ridiculous "answers" from doctors:
I was jealous of my baby sister's steel gray eyes and it was all in my head
I wo9uld be completely blind by the time I was 15....
...and more

It bothers me when people say things that are not true just for the sake of sounding like they know what they are talking about!

I mean no offense...especially to the many wonderful doctors out there who work hard to provide the best possible treatment for their patients! :)

Mary Jane's Playcare said...

You are right, Heather. It took 9 doctors to find out what was wrong. And some of the remarks were absolutely way off the mark. But what did we know. So, we would come home completely depressed.
But, on the other hand, when we met the doctor who knew what was going on and the low vision specialist who did not think you were faking...well, even though it was not good news it was real information.
Keep writing and putting your story out. There are many people who will benefit from it. You are some thin' Heather! Love ya

The family Wad said...

HI

We are awaiting diagnosis for our girl , it is suspected stargardts and they are testing my other daughter aswell.

It is a comfort to read other peoples stories and find help and advice in the blogs and facebookpages .. Brava ..Keep going .

Mary Jane's Playcare said...

Please let us know how your girl's are. Hope all goes better than you think.
Mary Jane Gangi ( Heather's Mom).