When to use a mobility aid

A common question that arises amongst people with Stargardt's Disease and other vision impairments is whether I use a cane, a guide dog or neither. The question then  asked is visual acuity, how it helps and why some people use aids and others don't. I've been thinking about this question a lot lately and hope to help others with a vision impairment and without to understand why I choose to use a cane and what factors influenced my decision, and hopfeulyl help others to decide, whether to use a mobility aid.

As I've previously written, my cane and I have a love-hate relationship. I went through a period of using it to not wanting to know there were three in existence in my house, to becoming best friends with it once again. For the past few months I have made a conscious effort to get used to using it and taking it whenever I'm out. 

There were two main reasons I chose to use the cane:

• Crossing roads: My ability to cross a road is absolutely terrible. I'm an avid walker and love to get out in the fresh air and walk to calm my mind. Every time I found myself curbside, I felt vulnerable, clumsy and even more vision impaired. I couldn't make out whether there were cars coming, if near a busy road there was no auditory break in the traffic and I felt like I was walking into an abyss. Then came the anxiety from the feeling of vulnerability and the loss of control. When I walked with another person, I would solely rely on them to usher me across the road. I knew this wasn't healthy and I couldn't rely on others. So Mr Cane came back into my life once again like a clingy, annoying boyfriend although this time he had gotten his act together and we were actually getting along. I found just having the cane in my hand to indicate brought a sense of calm and confidence to crossing a road, it let others know that my vision sucked and they should be patient and careful if I start to cross. More than anything it was security. It was a way of announcing to the world I'm vision impaired. People's reactions were (mostly) helpful, they would stop and let me cross and some even reversed to let me pass. It restored my faith in humanity and made me feel like the world isn't such a scary place. 
• Pavement problems: I'm a klutz on the best of days and now I'm a super klutz. The pavement around where I live seems to be really bad, the huge eucalyptus and gum trees' roots have made the footpaths cracked and uneven. Since using the cane I haven't had any stacks or tripped over where I normally would. Just to reinforce this, I went for my usual walk the other day without my cane and I tripped numerous times and realised it was my karma for leaving the cane at home. It's actually quite surprising how helpful the cane is when on the street. I never noticed how much I was concentrating on where I was going and what I was walking into. When I started using the cane I found I could relax a lot more and take in my surroundings using my other senses rather than staring intently at the ground in front of me.

Choosing to use a mobility aid such as a cane or guide dog is a highly personal choice and isn't solely based on visual acuity or degrees of vision. Each person is different, has different experiences and different needs. Here are some of the things that are usually taken into account when deciding on an aid:

• Confidence: This is extremely important. Being confident with your surroundings, with the amount of vision you have and the way you use it will impact whether you decide to use a mobility aid.
• Lifestyle: This includes work - how you get there and what you do at work ie whether you need to navigate a great deal, leisure activities such as sports or running and social situations. Use of a mobility aid may not be needed in all areas of a person's life. It is pretty much impossible to run with a cane (yes I've tried and looked like a clown running down the street) and sometimes it's better left at home.
• Location: Where you live can also play a part. If you need to travel far on public transport or have access to lifts from others will influence the decision to use a mobility aid.
• Perception: How you perceive mobility aids plays a huge role, not so much for the positive. I personally have struggled with, and still do, the stigma surrounding using a cane. There tends to be a little less stigma associated with a guide dog as they are far more cuter than a cane! As much as I'd like to say how you perceive using a mobility aid doesn't attribute to whether you use one or not, it really does play a major part. I avoided using my cane for a very long time because I was embarrassed as to what people think and I still have times where I feel like people are staring and talking about me. 

The one thing I have learned is that if I need help to not be ashamed and to use it. If a cane, guide dog or anything else helps me navigate, feel confident and improve my quality of life I should use it. I also know personally and from others with a vision impairment that because we have some sight we don't 'deserve' a guide dog. This is utter rubbish. As I mentioned before, if it helps us in life, we deserve it. Be open to trying mobility aids, sometimes you find a use for them that you had never considered.

 Image source: http://www.google.com.au/imgres?imgurl=http://4c1lions.files.wordpress.com/2012/06/white-cane-day.jpg&imgrefurl=http://district4c1lions.org/about/white-cane-safety-day/&h=399&w=600&tbnid=ELquhjxngEcDHM:&zoom=1&docid=XQcXF0wr-QH-OM&ei=44aOVb_HA9P68QWVnYDQDQ&tbm=isch&ved=0CDoQMygXMBc and https://www.pinterest.com/pin/274578908507893730/

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! 

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.

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.

Happy Rare Disease Day!

Today is Rare Disease Day to raise awareness about rare diseases and the impact these diseases have on people's lives. It is an international day held annually. 

Stargardt's Disease is considered a rare disease, with the incidence widely debated. Here are some statistics I can dig up about SD:

• SD affects about 1 in 10 000, so in Australia there should be approximately 2 300 people with SD ( I know about 10 so the other 2 290 people please get in touch!). There should be appropriately 31 800 in the United States and 6 400 in the UK. 
• SD accounts for 7% of all retinal degeneration. Other retinal degenerations include retinitis pigmentosa, Usher's disease and Leber congenital amaurosis.
• SD is also knows as fundus flavimaculatus. I'm pretty certain this is what Harry Potter would have called it if he were diagnosed. 
• It is thought that 5% of the population carry an abnormal gene for processing vitamin A. So 5% of the population have the possibility of developing a retinal disease.
• 100% of those affected by SD are amazing people!

Here's the official video for 2015.

Spread the word and spread the love! 

To find out more information, see what events are being held locally and read other people's stories, check out these links:

Rare Disease Day - International

Rare Disease Day - Australia

Rare Disease Day - US

Rare Disease Day - UK

Sources:

http://eyewiki.aao.org/Stargardt_disease/Fundus_flavimaculatus

http://www.md-health.com/Stargardt%27S-Disease.html

Update on Stem Cell Treatment

If you haven't already heard, results from the phase I trial using human embryonic stem cells for patients with Stargardt's Disease and Macular Degeneration have been published in the Lancet, and the results are very promising!

Nine patients were treated from each disease which involved surgical implantation of the stem cells into the retina of one affected eye. The main aim of phase I trials is to test the safety of the intervention, so whether there were an adverse events or complications from having the stem cells implanted, and in this case whether the stem cells 'stuck' to the eye. The investigators also looked at whether there was any improvement in vision.

Excitingly, the results were very promising - there was no major adverse events (although some patients with Stargardt's developed cataracts but this was treated surgically and didn't affect vision after treatment), no rejection of the implanted cells, no abnormal tumour growth and it looked as though the cells remained functioning at follow-up (which was up to two years after initial implantation). To top it off, there was also objectively reported improvement in vision in the treated eye!

To put it in perspective, this is still early days and we won't be running out to get stem cells injected tomorrow. Although it is definitely looking like a very possible treatment in the future and in our lifetime! The next step is to proceed to a phase II trial which will include a larger number of patients and find the best dose (number of cells to be injected) to gain the best results. Further evidence of the effectiveness will be developed to show how much vision can be restored, if it is permanent, whether the implantation needs to be done in the early stages of the disease and many other questions.

This is extremely exciting and shows how amazing modern medical science can be. It can give us all a little more hope that potentially in the future we may be able to see better, and if not us, the generations to come who will unluckily have to experience the hurdles we have faced. 

For more information here are the links to the results and news reports:

Wall Street Journal

The Lancet

Audible Book Giveaway

I'm very excited to share that Audible has given free audio books to give away to five readers.

For those of you that haven't tried Audible, it has thousands of audio books, current and past, and you can access them on your phone or tablet through their easy to use app. I have been using Audible for some time now and without it I wouldn't be able to have continued 'reading' the books I love.

All you need to do is become a 'follower' of this blog (right hand side), and comment below with your name, age, condition and a book you'd love to have as an audio book.

You have until midnight Sunday 10 August to enter.

Good luck :)

The Finger Reader

Now this is one invention I am super excited about. Since I came across a news article about it a few weeks ago, I've been thinking of all the ways I could use it and how beneficial it would be to the vision impaired.

The FingerReader is a prototype developed by MIT and is a ring which reads printed text. It really is incredible. Personally, I despise using any magnifiers in public, so I struggle to read things or ask for help. My mind has come up with countless uses for the FingerReader:

• I could actually read the menu for once, instead of making it up!
• I could actually read the price on tags when shopping, especially clothes, so no excuses for spending too much money!
• When I go to sign various forms, I could read through the document myself instead of relying on a dodgy person who really just wants my signature!
• I could tell who the mail is for, instead of opening everyone's mail!
• And the list goes on....

Personally, I don't find magnifiers useful for the above situations. I find that they are usually large, draw attention and time consuming as it takes time to focus on what I'm trying to read. 

I look forward to the progress of the FIngerReader and really hope it come to fruition in the near future.

Check out the MIT website.

FingerReader

My cane adventures

I've had a cane for over a year now but haven't been brave enough to use it. My vision is further deteriorating and I decided it was time to accept the cane. I have an amazing mobility instructor from Guide Dogs who has been helping me learn how to get around using the cane.

A big issue for me is not feeling like I'm in control stemming from the fact I can't see what's in front of me and what's coming toward me. I know I'm a control freak so not being able to see where I am or what's coming up terrifies me and cause me anxiety. I've also realised than to cross roads I simply hope for the best which is not something I'd advise! 

Working with somebody is so beneficial, it is giving me the confidence to explore and feel comfortable using the cane. I've learnt how to cross a street, safe places to cross and to trust my ears more. I've also learnt how to use the cane for stairs which hopefully will prevent some of the bruises I have from constantly stacking it! Going up stairs isn't to hard but down is definitely a challenge with the cane and more practice is needed.

In my last session I walked down a main road near my house. I felt as though everybody was watching, of course I couldn't see them, but you get the feeling that people are staring. I was also thinking that someone who knows me could see me and I felt uneasy at the thought. Not so much that I'm embarrassed of my condition but I'm still getting my head around it. It's definitely a foreign feeling that's hard to describe unless you have experienced it. In a way the moment was like me coming out and saying 'hey I'm vision impaired'. I also made a comment about the impression I'd make, walking down the street in high heels with my Louis Vuitton handbag.. Definitely a sight to see!

I highly recommend talking to your local vision impairment organisation and getting involved in a mobility program. Guide Dogs NSW/ACT has been the most positive experience I've had on this journey. And most importantly, don't be afraid to accept help!

The things you don't get told!

Over the past few years I've learnt so much more about what is actually involved in being vision impaired. When I was diagnosed, I was not told much except I will progressively lose my central vision. I was not warned of any of the other aspects I might experience. Here's a list of things I've learnt and what I do to help. Please share any other tips!

1. Eye pain: Typically I experience eye pain after a day at work or a solid studying session (usually after about one hour). I'm assuming it is related to the strain I put on my eyes to try and see everything as best I can! I experience this daily and it gets VERY frustrating.
What helps: Before reaching for my Panadols (paracentamol) I first try and rest my eyes. Since I always have to be doing something I will either close my eyes and meditate or have a nap. Obviously I can't just lay on the floor for a nap at work (I have tried!) so in worst case scenarios I go for pain killers. I also have found an eye drop that has helped with the burning and heat (Systane Ultra) and you can use this as much as needed. I usually use this after being on the computer. 

2. Headaches/Migraines: This is something I've struggled with for a few years. Generally I get a migraine on my left side which is the weaker eye. Migraines can be extremely debilitating as not only is the pain intense it can cause nausea and further sensitivity to light. I've learnt my triggers for an attack, including sun glare and overworked eyes, so I try to intervene as soon as I feel it starting to take over. Sometimes the attacks are so severe I have to take time off work. At the moment I get about one a month which has reduced. 
What helps: If I am having an attack, I sit (or sleep!) in a dark room and usually wrap a scarf around my head (the pressure helps the pain). Generally I don't find over the counter pain killers effective and I avoid taking anything stronger. My migraines have improved since changing other medications I was on so it's best to talk to your doctor too. Someone also told me to put a drop of lavender oil on each temple and I find this relaxing. To prevent an attack, I'll avoid spending too much time outdoors on a day with high glare and always wear sunglasses outside, which is a given for Stargardt's. And drink loads of water!

3. Sensitivity to light: Some days are ridiculously hard to be outdoors and even inside with the curtains open. Not only does it lead to headaches and migraines, I find it harder to focus and see. I'm guessing this is because the peripheral vision uses light perception to form vision, and since that is what I rely on to see, I am extra sensitive to it. 
What helps: If outdoors always sunglasses! Otherwise unfortunately it's a day where instead of being outside I put on a movie and stay inside!

4. Neck/back pain: I'm surprised my neck is still attached to my body after all the bending it does to read! I'm constantly leaning closer to the computer screen, iPad or whatever is I want to see! This is another constant pain. 
What helps: Making sure that the desk you are working off is set up well, with an arm for the screen. Also any adaptive technology to make the font bigger to eliminate the need to lean. I've also found that getting a remedial massage once a month to be a great help (and I enjoy massages). Massage also helps with the migraines/headaches. 

5. Anxiety/Depression: This is a HUGE part of diagnosis that is not addressed. It is understandable that when you are told that you are losing your vision, feelings of anxiety and/or depression develop. It is a hard thing to deal with. The most important thing to remember is you are not alone in this!
What helps: Talking about how you feel and what you are going through can help a huge deal, if it means talking to friends or family or speaking to a therapist. There's lots of strategies to deal with anxiety and depression and it's not something to be ashamed of. I for one battle anxiety a great deal. As I've mentioned in a previous post the grieving process ties in with these feelings. Also try mindfulness meditation, I have found it really helpful and it's also a time where I can rest my eyes. 

Our experiences are similar but also unique. The best thing we can do is talk about them and help one another. Sometimes simply knowing somebody else is experiencing the same pain or emotions can make you feel a little better. 

Update on Current Clinical Trials

It is an exciting time in medicine and especially for Stargardt's sufferers and others with inherited retinal diseases. Here is a summary of current trials:

Phase I/IIa study of StarGen (Gene Therapy)

This study is being conducted by Oxford Biomedica at two sites, Oregon Health and Science University (US) and Institut de la Vision (France). Recruitment was suspended earlier this year to investigate impurities in the substance. The study will resume in about three months. 

StarGen - Foundation Fighting Blindness

Sub retinal injection of hESC into RPE (Stem Cells) 

The phase I trial being conducted by Advanced Cell Technology is continuing. The second cohort was recruited in July. There have been no further updates since the last press release. 

Stem Cell Therapy - Advanced Cell Technology

Stem Cell Ophthalmology Treatment Study SCOTS

This stem cell study is using cells derived from autologous (your own) bone marrow which is then injected into the retina. The study is looking at whether there is improvement in visual acuity and visual fields. It is not only looking at Stargardt's patients but also patients with optic nerve diseases and other retinal diseases. The study is being conducted by the Retinal Associates of South Florida (US). This will be an interesting study to monitor.

Bone Marrow Stem Cells - Retinal Associates of South Florida

Safety and Tolerability of MA09-hRPE cells (Stem Cells)

This is another embryonic stem cell trial currently recruiting in Korea, conducted by CHA Bio and Diostech. The trial is similar to the ACT trial.

Stem Cells - CHA Bio and Diostech

Saffron Supplementation and SD

Another study currently recruiting is looking at the effects of saffon supplementation on Stargardt's specifically. The study is being conducted at the Catholic University of the Sacred Heart in Italy. The study is a crossover design meaning that each participant will receive the placebo and treatment for a period of time. I have personally tried saffron and feel as though my sight improved so I am looking forward to the results of this study.

Saffron Supplement Trial

ProgSTAR Natural History Study

This study is funded by the Foundation Fighting Blindness and aims to investigate the disease further and also follow the progression of the disease. This information can then be used in future intervention trials. This is a multi centre trial across the US, UK and Germany. This would be a great study to participate in if you are local to one of the centres. 

ProgSTAR - Foundation Fighting Blindness

Natural History of Eye Diseases Related to ABCA4 Mutations

Here is another study looking at disease progression in Stargardt's . It is being conducted by the National Eye Institute in Maryland (US). To participate you must be at least 12 years old and follow up is over five years. 

National Eye Institute - Natural History Study

Novel Quantification Methods to Detect Progression in SD

This is another trial currently recruiting which is using a specific technique is learning more about the progression of Stargardt's. The trial is being conducted by the Kellogg Eye Centre in Michigan (US). This study is focusing on kids and teens (ages 5-18).

Kellogg Eye Centre Trial

High Resolution Retinal Imaging Study

This study is looking at the use of an adaptive optics scanning laser opthalmoscope AOSLO to take pictures of the retina. The aim is then to analyse these pictures to better understand Stargardt's. This study is also being conducted by the National Eye Institute. 

AOSLO study - National Eye Institute

Looking forward to seeing the results of all the trials.I will keep you all posted. 

The Grieving Process

Usually when we think about grief we only think about the loss of a loved one. We can also experience extreme grief in other situations, including the one we face after being diagnosed with a vision impairment which will ultimately send us legally blind. In fact, we are really grieving the loss of our vision, our independence, our hopes and dreams for the future.

I hope my experience was unique, although I highly doubt it was, but I truly felt abandoned at my time of diagnosis, like I was left in the dark by health professionals and given no guidance, no encouragement and no hope. As I have mentioned previously, I was told “you have a condition called Stargardt’s Disease, there’s no treatment, so there’s not really any point in us seeing you again unless you face problems in the future”. I walked out of the ophthalmologist’s office feeling lost, confused and helpless. Being a person who you could probably describe as a perfectionist, I had my whole life planned, aspirations, goals, career paths, and it was all taken from me without any real explanation. I began grieving the impending loss of my vision and all that would follow.

A common model of grief (Kubler-Ross model) talks about five stages of grief. When grieving, you can go through the stages and then revert to a previous stage. The experience is different for each individual. Denial is commonly the first stage. “I don’t have this condition I see fine” or “they must have it wrong, we have no family history of eye disorders” were common thoughts I had. I really think I spent the last two years in and out of denial until I received the result of my genetic testing which finally confirmed that I have the faulty gene.

Anger then follows, “why me” or “thanks mum and dad for giving me rubbish genes”. The thought of “why me” went around and around in circles in my head. I was also angry about the timing, just finishing my degree and with my independent adult life ahead of me.

Another stage of bargaining also takes place. This made me search for hours on end for alternative methods to halt the process, diets , supplements, miracle cures that were hiding somewhere. Although this is not necessarily detrimental, if it gets to the point of being all consuming it can be quite distressing.

Of course depression shows its head in the process. This stage is probably the most likely to reappear. Just as you think you are coping ok, bam, he’s back. I’ve allowed myself to have the days where I do get down about the situation, as long as I promise myself I will get back up. It is ok to feel sad, we are losing an integral sense, but we need to remember that there’s a way through this.

Finally we meet acceptance. I don’t think I’m there yet. I may tell myself and others around me that I have accepted my condition, but deep within me I know I haven’t. It’s also hard to truly accept a degenerative condition because just as you start feeling at ease with the situation, your vision deteriorates and you feel as though you are back to square one.

All in all, it is absolutely normal and healthy to feel each one of these emotions and different times. I highly recommend speaking to a professional. I think it should be mandatory that when a person is diagnosed with a vision impairment they are offered counselling and support. Also talking to family and friends can help with the process, after all, it is likely they are grieving with you and feel even more helpless than you do as they don’t know how you feel or how to help. We should all remember that to feel this way is normal and know that you are not alone.

Below are some helpful links.

Headspace Australia - Grief

Beyond Blue Australia

Mental Health America

Mental Health Foundation UK