What does it mean to have Stargardt's Disesase?

There's no one single answer. Different people may discover they Stargardt's at different stages in their life. For me, I found out when I was 9 while there are other who discovered it even earlier or much later in their lives.

Even though we may all be diagnosed with SStargardt's some people are able to drive and while others can barely see. Some of us lost much of our vision in a few short years while others lose it over a long period of time.

Hence there's no black and white dfinition of having Strgardt's because like all things, there are variations and situational factors.

Regardless of which stage you are at, living with fear is always apart of the reality we face. There's lways going to be a scary thought in the back of the head telling use perhpas we may be blind one day. No doctor can guarentee we won't lose our vision, all they can tell you is in most cases you will only lose central vision and still retain peripheral vision.

For most people, they don't realize the severity of this disease, to them, my ability to walk talk and do noraml things is just.. normal. They don't realize I stare at a menu even though I can't read a word. I nod when they point at something far away and say hey look at t that. Perfect strangers wonder why you stare off to the wall behind them instead of looking straight at them. They ask if I"m talking to them and always has a pzzled and often judgemental look on their face.

I smile, and shrug it off like always. But i guess the worst part about hvaing Stargardt's is more likely than not, your friends and family can't understand you. Not unless they themselves have been through some life altering trauma. So much is taken for granted because we
"look" so normal.

But it doesn't mean you can't have a good adventurous life. It just means everything is that much more harder even just being "normal". There may be things that you can't do, but most things you can. Often the only thing that stops you from it is yourself or people that care for you. They become over protective and deter you from living life to the fullest. Remember that htey mean whell, but also rememter to live your life. Life's not worth living if its lived in fear. Not to say there isn't fear in our lives, but more so not to let this fear stop you from trying.

Maybe being safe is what you want, and tha'ts ok too, just as long as you are happy. Stargardt's taught me to see things beyond the surface, it made me a much more humbler and compassionate human being. It gave me an appreciation for the simplest things in life and the wisdom to not take things for granted.

Sometimes the worst thing a friend of family can do is to tell the person how they should feel. The intentions are always well, but the effects of that statement usually does the exact opposite of good. Trust and support is the best present you can give to any person. A simple belief that they will find their way and unconditional support even if it looks hopeless. And by support I don't men tell them there will be a cure one day, I mean support them and let them know they can still do anything they want. The worst that cn happen is they find out they really can't, but even then at least they tried and for most people that's more important then the end result.

For those who have Stargardt's, no one is punishing you, you deserve happiness just as much as the next person, and renenber that life is often a self fullfilling proficy. So believe in yourself, don't ever let someone tell you you can't.

Advice on going into an interview.

There's no absolute answer but this is what I've done in the past. Normally I don't disclose my condition until the very end of the process. However, I do indicate that I can't look straight to let the interviewer know I'm not avoiding eye contact. I mean this may lose some points with people but if that's the case there's not much that can be done. Ultimately, it comes down to the person seeing your ability or seeing your disability.

When I first graduated and tried to look for a job, I usually do let them know before hiring me so that they ahve a clear understanding of what I can and cannot do. As I've grown in my career, I seldom disclose the extent of my disability during an interview since I often find it irrelevant to my ability in getting the job done. Generally, I try to look for a job that I can use computer to do much of the work which then enables me to enlarge and still work like any seeing persons. However, if it might effect your performance and ability to do your job, I think it's only fir for you to disclose partially so that the employer would be more accomadating to your needs.

Reality is, discrimination will always happen whether its in the open or not. Some people will openly discriminate you and others will simply cross you off the list assuming you are incapable. However, once in while you will meet a person who sees your value, if you're lucky enough to find that boss, do your best and that will take care of the rest.

We can't avoid discrimination and it is a fct we are at a disadvantage o other seeing persons when it comes to general office admin work. Thus its crucial that you find something that sets you apart, it would be something that regardless of visually impaired or not, you would not be replaceable.

In my experience, patience and persistence is key. Some people find a great environment to stay in on their first try, others like me go from job to job looking still. Sometimes it can be depressing but I think if I can find the one right opportunity, all the other bad jobs would just be a bad dreams.

It's not easy, and I don't really think it will ever really be easy. But you'll adapt like all other things in life. Finding the right job is not easy for anyone (seeing or not). So don't sweat it, let things take its course, prepare yourself the best you can in building your skill sets and keep trying until you find someone who can appreciate your talents.

What's your faith?

I strongly believe that faith is a critical element in finding peace with oneself when facing any type of illness or disease. It's the foundation of establishing vlue and acceptance in any patient's mind.

Now is there a best faith that can guarentee inner peace? I don't think so. It could be that I haven't found it myself, but in my opinion, every person has a set of core values which may reasonate closer to one relign more than another. Regardless if you are a Buddhist, Christian, or Muslim, the goal of your faith is help you accept your conditions and find peace and comfort in your heart.

My encounters with relign...
Although I was never Baptized, I've always had to Buddhistm and Christianity in my younger years. It puzzled me when they tell me God loves everyone and yet it still felt like I was being punished with Stargardt's. It made me angry at this "god" who in my mind is punishing me without letting me know or understand what I've done wrong.

In Buddhism, the main idea is about karma. It is a way of thinking where your actions are the seed and your conditions are the consequences of your actions. Because Buddhists believe in reincarnation, your past lives can have an impact on your current life. With this in mind, I often blamed myself fohaving Strgardt's in this life. Perhaps it was a lack of resect and appreciation which led to this life's lost in vision. This kind of thinking in a way, helped me to come to terms and try to ccept and learn hoping I don't make the same arrogant mistake in this life.

But ultimately, faith eventually became internalized whereby I need to rely on myself for my needs and wants. A simple belief can help me get through a bad day, a reinforcement of positive thinking to keep my spirits high. But mostly, if gave me a false sense of control whereby I can be the master of my fate empowering myself to chase dreams or try new things.

No matter which faith you choose to believe in, always remember that you are the key to your own salvation. Any faith is there to help you accept your conditions it can't help you recover from Stargardt's. Faith for me is a way of fighting back those depressing moments.

Struggle between your logic and emotions

Often what people don't realize about having Stargardt's is on any given day, we may look just as normal as the next person. But if it's one thing life has taught us, appearance can be deceiving.

No matter how normal a Stargardt's patient may look, they are faced with challenges everytime they step outside of their regular routine. There are always new difficulties that needs to be overcome even in life's simplest activities. Wherever you go, there is a constant reminder of the inconveniences of not being able to see.

Whehter is catching a bus, buying groceries, travelling, schooling and learning, everything is related to being able to see. If you're a parent or relative of a Stargardt's patient, then remember not to take anything for granted, because no matter how simple an activity may be to you, often the inability to see my prohibit the Stargardt's patient from accomplishing that task.

It's a challenge to overcome the physical inconveniences, but the real demon is often within. The ability to process ignorance and prejudice becomes crucial to those who has any type of disability. Facing constanto challenges, I often felt a sense of helplessness due to my inability in changing my condition. There will always be good and bad days, some days when I am more emotional, I still feel a ense of sadness, but on other days, my logic tells me I am a very lucky person. One thing is for certain, it will take a very long time before these emotions are trully digested. Most people never come to terms with their life.

It's a tiresome struggle, and perhaps one that will never trully go away. And there's nothing anyone else can do to help except to be supportive. As a parent, friend of relative, be supportive and understanding, even if you may not understand. Give them the benefit of the doubt and have faith in their ability to overcome any challenge.

Support them and they will find their way in due time.

Accupuncture for Stargardt's?

Since last September, I've been in Asia receiving accunpuncture treatments. Although there has been some setbacks inbetween, I've had close to half a year's worth of weekly treatments.

Why Accupuncture? I have a friend with some eye condition who has indicated this particular doctor specializes in accupuncture for eyes, often helping to stimulate nerves and has had some results in lowering perscription. Although the thought of having needles in my head and around my eyes is difficult to digest, but I figured it might be the only way to help reduce my growing perscription.

The Treament Process. Weekly sessions with each session totalling about 14 needles in both the top of the head and around the eyes. Accupuncture is based on Chinese Medicine's philosophy of stimulating specific spots which is related to a certain body part. The idea is to increase blood flow to that area and allow the body to recover or rejuvanate itself.

My Thoughts. The accupuncture sessions has been trully energy consuming both in body and spirit. The physical pain of having needles in your head is tolerable but still fairly evident. Especially when it comes down to the four needles cloest to your eyes. It feels like the needles were placed deep within the muscles around the eyes and at time s I was afraid if I move my eyes too much it might go into the eye (I think that was more fear than reality) After the needles were inserted, you wait about half hour before taking them out. The physical pain comes from the skin because the skin on your face tends to be more soft and sensitive. In addition, the tiniest movement in your muscles sends sharp pain in the muscle. On days where i have sniffles and allergies, the throbbing pain becomes even more evident. (felt as if i was having trouble getting oxygen to my head) After each session, there is always an unexplanable tiredness that follows, rest and drinking lots of water is recommended.

The mental state of mind was evne more overwhelming than the physical pain of these accupuncture sessions. The hope of improved vision, the sight of other young children being brought by their parents. The unfairness of this world and the desperation of having Stargardt's Disease. Being in that bed is a constant reminder of my condition.

My Results. The only thing I really felt was after each session, my eyes seems to be clearer when looking farther, things seem brighter. But my perscription still remain the same.

I don't relaly know what to think. At this moment I've decided to halt the treatments because I feel it is not worth the pain. Although the real struggle comes when there's is a undying thought that tells you "perhaps you didn't try hard enough or long enough to see a difference" There are some patients there who has received treaments for years, yet I'm not sure what the real results are. But what I've concluded is, if I can't believe that it's going to make a difference, then it would be even harder for the treatments to have real impact.

The pain that accupuncture brings is more than just a physical nature. It brings out hte darkest side of the disease and no matter how much I tell myself, I still feel a mix of anger and sadness.

Maybe one day there might be a cure. But until then I see accupuncture as a way to relieve tension but not as a solution to eye conditions.