Monday, May 18, 2015

Real People #4

Today I'd like to share another story from someone I have been able to become good friends with. Janet is another young lady who I have watched flourish and grow and I am so proud of the positive attitude she has adopted that also helps me stay positive. 

Janet Ngan, 24, Phoenix, Arizona, USA

When were you diagnosed with Stargardt's disease and how did it affect you at that time?

I was first officially diagnosed with Stargardt's disease when I was 15 years old.  It feels much longer than that because I remember getting my first pair of glasses when I was in first grade (age 6). I always had vision problems and I spent most of my childhood going to different doctors and getting new glasses. I remember never being able to read the board at school and having issues adjusting to light from the sun after recess. However, after seeing so many doctors and getting new prescriptions for my glasses I felt like it should help so I started pretending like it really worked. I would go to school early or stay late so I could copy notes from classmates and sit in the front of the classroom as close to the board as possible. I would even pretend to forget my glasses so I could get someone to read me what was on the board. This worked out okay for a couple years but then as schoolwork started getting more difficult it got really hard to hide my vision. When I was a sophomore in high school, we had our annual health fairs to test your vision, hearing, etc and I did so bad on the vision part that they sent a letter home to my parents saying that I needed to see a doctor. When I went to see my doctor, she didn't understand what was wrong with me so she sent me to a “special doctor” (ophthalmologist). I remember it was the summer of 2006 and I was sent to about six or seven different doctors performing special tests on my eyes. Finally, when I saw my ophthalmologist again, he told me that I had a rare eye disorder called Stargardt's disease. The rest of that summer was so hard and I had so many emotions. I cried almost everyday, blaming myself, feeling like the biggest failure in the world, and just could not bring myself to accept it. But after awhile things cleared up and I learned to find the positivity inside of me. Even though I was healing from my emotions I still felt ashamed to tell my friends about it at the time. I hid the secret from my friends, classmates, and teachers. This only lasted for a little while because when I started doing very poorly in my algebra class I knew I had to tell someone. Thankfully, my algebra teacher at the time had noticed that something was wrong with me and I confronted her about my vision. She contacted the school and found two faculty members who worked with students with disabilities such as those with a visual impairment to work with me. They provided me with different resources such as using a CCTV, magnifiers, enlargement my textbooks/exams, extra time to complete my exams, and a note taker to help me in class. This was like being in a new world for me. I was still kind of embarrassed by all the attention of carrying textbooks that were almost three times its size. But I did find that these accommodations were helping me tremendously in my classes. I worked really hard and my grades were finally picking up and it actually didn't feel dreadful to go to class everyday. So at the time I was diagnosed I felt like the disease made me weaker but I've realized that it was what I needed to make me stronger. It was definitely a struggle and some days it still feels rough but I've learned to not give up and try my very best in everything I do. I've learned to ask for help when I need it even though I don't want to. Most of all, I learned that Stargardt's doesn't define me, it is my attitude and how I choose to react to it that makes me who I am. I can't change something that is beyond my control but I do have control on how I live my life.

What parts of your life have you adapted because of this disease?

I think Stargardt's has affected many aspects of my life but the most recent and hardest part was the inability to drive a car. I was diagnosed at the age where I was supposed to get my instruction permit to start learning how to drive but I was unable to because I failed the eye exam portion of the test. So I never really had that experience of driving throughout my teenage years and having a car during college. When I was in college, I lived close to campus so I could ride my bike or take the shuttle to school so it wasn't a big deal. When I went out with my friends, they usually picked me up so I didn't have an issue until after I graduated. I learned that a driver's license was the ticket to EVERYTHING from going to places on your own to getting a job! I did not prepare myself for this struggle when I was in school so I felt super lost at the time. I thought I could just ride the bus but I didn't realize how scarce, unreliable, and time consuming the public transportation system can be. So I ended up talking to my doctor/low vision specialist and they told me I was able to drive with bioptics. Bioptics are these lenses that have a telescope on top that magnifies like a binocular. I was really excited for this and I felt like I was finally able to drive and be more independent. I spent my year off from school doing the bioptic training and it was just a huge struggle. At some moment I was really happy and felt like I was doing a good job. However, because of the safety and how my vision fluctuates I had to give up the driving. This was probably the second biggest hurdle I had to overcome since my diagnosis and it left me devastated. I didn't know what I was going to do with my life if I couldn't drive and get a job. It almost felt like the summer of 2006 again. But I didn't let it get to me as I picked myself back up and I talked to the local vocational rehabilitation about resources for the visually impaired. My vision hasn't gotten bad enough to the point for me to use some of the resources. I found a part time job working in retail and learned how to take the bus there by myself to work. This was my way of feeling like I could be independent no matter the challenges that Stargardt's brings. During this time I also reached out to people about my issue and explored the different options for me to find success. I knew I didn't want to move back in with my parents for them to take care of me for the rest of my life. I was passionate with public health and helping people improve their quality of life which was what I studied for my undergraduate degree but jobs were incredibly hard to find since I needed to be able to drive in order to perform the job in the community. So in a way I had to adapt my career to fit me as well. During this time period I worked on classes and applications for graduate school for occupational therapy. So in the beginning, not being able to get my driver's license felt like the end of the world to me because so many things I wanted to do revolved around that. But I was able to find a way to make it work and continue to grow stronger and adapt to the hardships that Stargardt's brings.

What are your goals and where do you want to be in ten years time?

This is a very good question! I know time goes by fast but I have no idea where I will be a whole decade from now! A lot can happen in that period of time and life is just unpredictable. So it is hard to imagine me at 34 years old (ew I'm going to be OLD!) when I barely know what is happening tomorrow. However, my biggest goal right now is to make it into graduate school and get my Master's in Occupational Therapy. I expect that in ten years I should be an occupational therapist and loving my job. I really want to be able to make an impact in people's lives. I want to help the visually impaired and other people with disabilities be able to find the independence and fulfillment in their lives. I want to reach out to people who may feel as lost and confused as I once was and show them that anything is possible and nothing is worth giving up on their dreams. Also, in ten years’ time I hope to have traveled more (hopefully meet you in Australia!) and cross off more things on my bucket list. I guess I'm pretty simple. In ten years’ time I just want to be someone that I can look at and be proud of. I want to be happy and make everyone around me happy. Sounds cliché, I know.

What inspired and motivated you to get you to where you are now on your journey?

Honestly, I feel like this disease itself has impacted me so much to become who I am today. Yes, it did bring me a lot of stress and challenges to get over. But what is life without these experiences that make you different from everyone else? Being able to go through each hurdle that comes my way and ending up here is super inspiring to me. There were actually times where I felt like I could never make it this far but I continue on this journey learning so much. I spent some time being angry at why out of the billions of people in the world it had to be me, but I don't think I would be the same person as I am without Stargardt's. It has really taught me to cherish life and to put in 110 percent in working harder to achieve my goals. I never wanted to take things for granted and just want to make use of all the vision I have to create a spectacular vision for the future. It has also given me the compassion to want to help others who may have similar problems get through it because I understand what a pain it can be. This was a huge reason why I want to pursue a career in Occupational Therapy and stay in the healthcare field. I used to think Stargardt's was the biggest curse of my life but I've learned to see it as a blessing. It makes me unique, I mean how many people have awkward stories of walking in the wrong car or not recognizing someone instantly while you're having a conversation with them?  Maybe that part is not much of a blessing but to people who know me and understand, it gives us something to laugh about later. Having Stargardt's also gives me the drive and determination to do anything and turn the “impossible” into “I'M Possible.” I know I'm always going to have those days where I feel depressed that I'm not living up to where I should be based on where I see other people but this just makes me want to try even  harder to get to where I want to be. Also, I think the more I understand this disease (such as from my diagnosis), the better I feel because I realized it is just a part of me and that I wasn't going crazy because I didn't have the same vision as everyone else. I actually found it very inspiring when I first read your blog and found that there was someone in the world who felt and experienced exactly what I endured. Even though we literally live on opposite sides of the world and we've never even had a cup of tea together, I feel this sense of closeness and energy with you because of the one thing we do have in common. I'm the type of person where I can get easily motivated and enthusiastic at life because I get my energy off of other people. So being able to share our experiences with each other has helped me significantly because I know that I'm not alone. I know that I can continue growing stronger than ever no matter what comes my way.

If you would like to connect with Janet on Facebook click here.

Thank you for sharing your experience. Despite our distance, you have been a huge support for me and motivate me to keep doing what I'm doing. 

The Stargardt's community we have all contributed to is incredible. Thank you to everybody who has been a part of it and keep all the emails, Facebook messages, tweets and Instagrams coming! 

Thursday, May 7, 2015

See Through My Eyes on Facebook

If you are on Facebook and don't already follow "see Through My Eyes - Stargardt's Disease", head over and make sure you 'like' the page here.

On the page I share up-to-date information on clinical trials and research articles, Stargardt's in the news and other information on services and resources available to people with vision impairments.

I also have a very exciting announcement to make in the coming weeks so make sure you stay tuned!

Monday, April 13, 2015

Real People #3

This month's story comes from a fellow Stargardt-er from my city. We live on opposite sides of Sydney and as yet have not met in person, but thanks to social media we have been able to connect and be supports for each other.

Mike Lainis, 53, Sydney, Australia

When were you diagnosed with Stargardt's and how did it affect you at the time?

My Journey with Stargardts began 5 years ago in January 2010 When I was 48 years old.  After loads of testing including blood tests and chest x-rays for TB! I was sitting in the ophthalmologist surgery blurry eyed from the "drops” and the numerous flashes of light from the fluorecein angiograph procedure (they pump you with green fluorescence in your veins and take photos of your macula all at the same time). She finally turned to me and said you have a late onset of Stargardts! I thought yes I am seeing stars at the moment,  Ok...., so my next question was what are you going to do? Laser, medication or an operation? What ! No cure! Just avoid the sun and Vitamin A supplements and see you in a year’s time, cheers.....

Wow. Went home told my wife and family, we climbed on the net for hours researching. Nothing. No cure or procedure.  I thought surely in this day and age all diseases have some kind of cure, nope, not this one. For the first three years it was more of an irritation not been able to do things I had done countless times before. 

What do you do for work and has the condition impacted you?

Throughout my life I have worked in the construction industry. I ran my own cabinet making business, for 10 years, producing some fine solid wood furniture. I slowly moved up to be a project manager.  I worked in London for 6 years on upmarket residential apartments in Kensington and Kew Gardens. I worked in Brisbane for 5 years on the prestigious David Jones Queens Plaza and Chermside stores. I worked in Sydney for the last 5 years on Hugo Boss, Coach and Thomas Sabo stores to name a few things I have done. However now I work at my kid’s school on a casual basis doing maintenance work. A far cry from what I was doing but I am at peace with that. The school has been very supportive.

What would you say are the defining moments since being diagnosed?

Late 2013 I had a "near miss" whilst driving. Nearly took out a traffic officer. Silly man was standing in the middle of an intersection! The traffic lights had stopped working, and he was directing traffic. I was looking to the left for other cars coming out of the intersection and did not see him. He was in my "blind" area of vision. I had to screech the car to a stop right in front of him. He wasn't happy with me, had the finger waving. Realizing I could have killed him I decided my driving days were over.

Then after last December holidays, maybe after too much fun in the sun, my left eye, central vision finally all went. After a visit to the ophthalmologist he declared me "legally blind". A shock to the emotions as I thought I still had a few more years to go.

What would you tell someone who is struggling with a vision impairment?

Being positive is critical in coping with this condition.

When I was at school I was involved in Scouting. Achieved the highest award (Chief Scout Award) and went on a Jamboree to America. After school I went into the army for a couple of years. In later years I was a river guide and then also lead an expedition to an Malawian Gamepark whilst been a member of the Royal Geographical Society in London.

During this time I was taught survival techniques and even ran a few courses myself. The greatest life lesson I learnt was, when you get lost in the bush or end up in a life or death situation, it is “the will to survive”. You can have all the training on how to light a fire or how to find water and food but if you give up mentally you die. The same with this condition, you can't let it take over. You need to fight it each day, develop new skills and ways of doing things. Accept the situation, you can’t change the fact you are going or are blind, and then move on with your life.

Lastly my faith in God has increased dramatically over the last few years.  God gives me the strength when I am feeling weak. My favourite scripture now is “I walk by faith not by sight" 2 Corinthians 5 vs 7. Whilst I believe Jesus is able and is willing, for us to be all healed of all diseases, I believe it is all in God's timing. There is a purpose and process to this condition in my life right now, to teach me perseverance and strength of character. 

My hope and prayer is that God will give someone the insight and wisdom to find a cure not only for one person but for all who have this condition. Hopefully one day I can be part of that process.

Thanks Mike for sharing!

Monday, April 6, 2015

Latest News on Stem Cell Research

I know everybody has been keenly following the Ocata clinical trial using human derived embryonic stem cells to treat both Stargardt's Disease and Age Related Macular Degeneration. Ocata published a  press release on 31 March. Here are the main points:

  • The Phase I/II study has been successfully completed on 38 patients with both conditions. This phase was to look at safety and dosing of the stem cells and has been reported to have no major risks or adverse events.
  • The Phase II part of the study has been given the go ahead and will also be conducted in England as well as the United States. 
  • The next phase will once again be looking at the safety and also the efficacy (ie if it improves vision) against a control group (used as a comparison for change). The effects of immuno-suppressant drug use will also be evaluated. 
What does this mean? 
It seems as though the trial is going well - since it moving ahead we can assume that there have been no major reactions from patients receiving the injections and that some benefit is being observed. The next part of the trial will recruit a greater number of participants to further evaluate what impact stem cell implantation may have on vision. The researchers will also try to find the best way of implanting the cells for greatest benefit.

There's still a little way to go before we will know for sure whether this treatment will work, although it is definitely looking positive at this stage. Generally a therapeutic trial will pass through four phases, each recruiting an increased number of patients.

I shall keep following and continue to update everyone!

Photo credit:

Sunday, March 15, 2015

How a person reads with limited central vision

I had a thought whilst lying in bed wide awake. I want others to get a sense of what it's like to live with Stargardt's. It's really hard to explain what it is like to lose something that you take for granted and use every second of the day. Then I thought to a chain email that circulated a long time ago, some of you might remember - a passage of a story was sent except the middle letters of the word were jumbled. Once you got to the end of the passage, it said that you had just read the whole story essentially spelled incorrectly, but you were able to read it.

This demonstrates how I read - my blind spot covers the middle of words, so I see the start of the word, possibly the end, and it's all a jumble. Yet I can still read it (it still needs to be in a larger font).

I've put together an example for you, have a go at reading this (beware I threw some tricky words in!):

  • Sagdtrart's Dasisee is a tpye of macualr degaeentiorn. It afefcts ynoug polepe, lkie me, and cehagns our levis frveoer. Tnihk aubot tihs, jsut as you are gitnteg uesd to lnviig yuor lfie, fgrniiug out yuor dermas and anirtapsois, tehn rnmldoay you ncoite sthniemog a liltte off in yuor viosin. The nxet tnhig you konw you're bneig tlod you hvae an ibunclrae dsasiee and wlil lsoe yuor shigt.

And just in case you got stuck, here it is written properly:

  • Stargardt's Disease is a type of macular degeneration. It affects young people, like me, and changes our lives forever. Think about this, just as you are getting used to living your life, figuring out your dreams and aspirations, then randomly you notice something a little off in your vision. The next thing you know you're being told you have an incurable disease and will lose your sight.

Imagine reading like that all the time, it does get tiring. It's as though the brain has adapted to read in a different way. The image below is of a meme that was circulated and a response was written by the Cognition and Brain Sciences Unit in Cambridge, UK, which you can read here. They explain some of the reasons behind how we are capable of reading words with jumbled letters, although we apparently read 11% slower. This makes sense as I have noticed it takes me longer to read. 

I'd be really interested for those who aren't vision impaired to share their experience reading this. I hope this gives a little more understanding into how myself and others with SD read.

Saturday, March 7, 2015

Today is a milestone

Today is a milestone in my journey. Apart from being my sister's birthday (Happy Birthday J!), it's also the day my driver's licence expires. 

I've held my licence since I was 16 and got my Learner's. My first care was this horrendous red Mercedes Benz station wagon that fit seven people, two backwards in the boot. It was our old family car and I think my parents gave it to me so they could keep track of where I was, because everybody knew the car and would report back to my Dad who would then phone me and ask where I was. Busted! Apart from it's hideousness, it was a sturdy, solid beast and kept everyone safe.

My second car was, once again, a dump. My Dad being a mechanic was always picking up old cars no-one wanted. This lead to my inheritance of an old blue Mitsubishi Lancer. The catch was that this car was manual, and I only knew how to drive automatic. I've never felt more uncoordinated in my life learning to drive manual. I stalled the car (not exaggerating at all) over 10 times at one intersection! Luckily, I finally got the hang of it and turned into the manual queen! 

My little Lancer got me to and from uni, and in my final year of uni I landed a full-time job and my first real income. My first purchase was a brand spanking new silver Mazda 2. She was my baby, my first really large purchase. It was only a few months after I bought my baby that I started having vision problems and was diagnosed with Stargardt's. What a slap in the face. 

I was told at that time I shouldn't be driving at all, but I'm NOT proud to say I continued to drive, only short distances and not on freeways. I know I shouldn't have but letting go was ridiculously hard. I wasn't coping with all the emotions of this diagnosis and this was another blow. 

As my vision deteriorated I knew I had to stop. That was a huge decision and something that caused me a lot of stress and anxiety. I've written about that experience previously. This was also when I decided to sell my car. It was a contributor to my rock bottom.

Even though I haven't driven for about a year, today still is a big deal. I've known this day was coming and it was always a black day in my mind. It feels as though it is now final, done, can't be changed and set in concrete. There's no chance I could renew my licence. It's almost as if I had hoped a miracle would occur and I would improve. I never lose faith until the day has passed! 

To be honest, I don't feel as bad as I thought I would. I thought I'd be feeling anxious and like my control is being taken away. Part of this lesser feeling is probably due to not having driven in a while, I essentially weaned myself of driving, then the idea of driving. I've really surprised myself and I'm surprised in my strength and positivity. 

I still hate public transport and will continue to avoid it (chauffeur wanted, enquire within!). This just gives me more motivation to succeed and bring about change for others. I want everyone else to know that it DOES get easier. I'm not going to lie and say it's a walk in the park and I don't have days when I just want to cry, but overall my outlook has changed and my drive just keeps increasing. 

It's hard to let go, but do it slowly if you can. It always looks worse when you are looking into the future, but once you're there, it's not so bad. Then when you look back, you think 'wow, I did well' and can feel proud and push yourself further. 

Stay positive and never, ever give up!

Photo credit:

Wednesday, March 4, 2015

Real People #2

This month's story comes from a good friend of mine who has been a great support to me from my early days of diagnosis. I hope he can inspire you too.

Jono Goerlach, 32, Canberra, Australia

Tell us a bit about your condition and your symptoms.

At age 15 I was diagnosed with Usher Syndrome Type 2. This condition combines both Retinitis Pigmentosa, and slight-to-moderate hearing loss, which I have had since birth and wear hearing aids to combat this.

What is your current situation, what do you do?

At present, my primary focus is on being a full-time Triathlete. I've been involved in the sport for almost 3 years, building towards my end goal of qualifying for a Paralympic Games. In an effort to give myself the best opportunity to achieve this goal I chose to move to Canberra one year ago where my coach and his triathlon squad are based.

Since moving to Canberra I have also signed up to a double bachelor degree at the University of Canberra, studying Sport & Exercise Science/Sports Management.
On top of these two time-consuming responsibilities I work part-time as a Soft-Tissue Therapist to help pay the bills and maintain at least a little social life.

What was your biggest hurdle and how did you over come it?

My biggest hurdle was around the age of 26 when I reached a point in my life where the reality of my impending blindness started to come to fruition - and I wasn't even prepared for it. Initially, admitting that I was depressed and dealing with anxiety was the first step to getting back on track. The next step was to find something I was passionate about, set goals to work towards, so I could have something to focus on - sport was my passion before my diagnosis, and sport was the passion that would be the answer to moving forward. Since returning to sport my life has completely changed, to the point where I feel like I've lived two lives. I'm only just getting started :)

What are your goals for the future?

My main goal is to represent Australia at the Paralympic Games. Up until October 2014 I was focused on Rio 2016, but unfortunately that opportunity has been taken away simply due to fact that our sport has five types of disability but only three types/classes were offered a medal event. The positive, though, is that I do have an opportunity to go to the following Paralympics in Tokyo 2020.

I am also driven to finish my degrees so I can start working with athletes with a disability in areas of sporting development/management. I am also passionate about reaching out to the wider vision-impaired community to educate them and their supporters about the many opportunities there are available to them - having a disability is an opportunity to find your true abilities.

What would be your best bit of of advice for others going on a similar journey?

Find your passion and let it take over your life. Having that focus will produce more opportunities than you could imagine - life is defined by opportunities, even the ones you miss.

If you'd like to follow Jono's journey to triathlon greatness follow his Facebook page here.