Saturday, February 28, 2015

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:


Tuesday, February 10, 2015

10 Tips for Studying With a Vision Impairment

The new study year is upon us, I'll be in my final year of psychology and I'm sure there's many of you also returning to uni, school or college. I though it would be beneficial to put together a list of tips for studying with a vision impairment not just for anyone reading this but also for myself so I can stick to it throughout the year!

I have been at university now for close to ten years, half of that time I had perfect 20/20 vision, the other half I have slipped to legal blindness at 6/60. Just acknowledging this is a crazy thought - I still to this day can't fathom how I've gotten to this stage! Despite the lack of vision, I have remained determined to keep studying and find a career I love and can maintain with my vision. So here are the tips I've picked up along the way:

1. Take frequent breaks. This is a given for anybody studying, vision impaired or not. But if you have a vision impairment it is important to take more frequent breaks to give your eyes a rest and let them recharge before slaving over more readings or assignments. I try and force myself to take a break every 30 minutes, or when my eyes are starting to hurt and struggle to focus. When you take a break, make sure you do something that doesn't use your eyes. I like to put on some music or an audio book or get in a little bit of mindfulness meditation which also helps me re-focus. Find something that works for you, that gives your eyes a rest and also helps you to relax. If you take frequent breaks, you will be able to study for longer periods of time, perfect for those cram sessions!

2. Utilise adaptive technology. There is an abundance of adaptive technology options available to help in all sorts of study situations. I use Zoomtext for my computer/laptop, I use an iPad for screen reading of textbooks and documents, I have multiple hand held magnifiers for paper documents and also a CCTV. There are so many options available that can suit your needs. The best place to start is by getting in contact with a low vision service in your local area. The most important thing to remember is that it takes time to get used to using these devices and to be patient. I was extremely resistant to using a lot of them but once I got the hang of them and realised how much they help I can't do without them. 

3. Learn how to listen rather than read. This was something I was resistant of doing for a long time. It seems like a basic concept, to listen to a textbook rather than read it, but it's actually a different way of absorbing information and it takes time to get used to. I would use the reader option in iBooks on my iPad, and within 30 seconds the voice had put me to sleep! It's also harder to take in information from a long document by listening to it (especially when it's read by a computer or monotone voice). It takes some time to get used to but once you've got the hang of it you will wonder why you didn't start earlier. It gives your eyes a chance to have a break whilst still being productive and taking in information. Definitely a skill that should be honed! 

4. Be organised and prepared. This is probably my biggest downfall. I am a last minute crammer and will leave my assignments until the day they are due. Possibly because I like to torture myself. I've now learnt you CAN NOT do this when you have a vision impairment. It creates more stress and leaves you with migraines that last days. Make sure you get yourself organised at the start of semester. Plan when assignments are due and start them early so you can do a bit each day over a few weeks. Be diligent with this as you will pay the consequences if you leave things to the last minute. 

5. Build relationships with staff, students and institutions. This is important to ensure you have the support you need. Don't be afraid to ask if you need help with something or to get work in a format you can read. Find the staff members you most trust and use them as a point of information. It is also beneficial to have friends who are doing your course who can help at short notice if you need it. Having studied my last course via distance, sometimes this is hard as you don't get to meet any other students. Facebook works wonders for this and there's always someone willing to help out. The most common problem I come across is missing textbook chapters and other students have offered to scan them for me instead of waiting for the uni. 

6. Know your rights and entitlements. As I have mentioned in previous posts, sometimes you have to stand up for your rights. Everyone has the right to an education and reasonable adjustments need to be made for a person with a disability - don't let anybody tell you otherwise. Most institutions have a disability centre that can help with most things but still familiarise yourself with your rights. Don't be afraid to stand up for yourself and ask for the adjustments or resources you need to succeed.

7. Don't over commit. This is something I also tend to do - take on too many subjects. If you have just begun studying, start with a small workload and see how you go. You can then take on extra subjects in subsequent semesters. You don't want to put yourself in a position where you are stressed and don't do your best. 

8. Don't be afraid to ask for help. If you need help - ASK. Don't be embarrassed or feel that you are useless. There's nothing wrong with asking for help in any situation not just studying. Not only will this benefit yourself, it will also help others to understand your situation and the impact a vision impairment can have. It's a win win for all!

9. Find what works for you to minimise symptoms. The most common symptoms I experience are eye strain, eye pain, headaches, migraines and even nausea if I've been at it for too long. Find little tricks that work for you to help minimise these symptoms. Apart from taking breaks, try a cold compress on your eyes. This will reduce some of the pain and strain. I also use cucumbers- they actually work! Don't forget to look after yourself, get a massage to reduce tension in your head and neck from straining to see. 

10. Stay positive through the tough times. Studying is not a walk in the park. It can be hard work. It can be demanding and stressful. There will be times when you just want to throw in the towel, it's too hard, it hurts too much or it's too much of a struggle. Don't give up! You can get through it, and achieve great results. Don't let your vision be a hindrance, it doesn't need to be. It doesn't change your intelligence or your chances of success. Everything is achievable!

Saturday, January 31, 2015

Standing Up For Your Rights

I haven't really touched on standing up for myself in terms of my rights as a person with a 'disability' since starting this blog almost five years ago now. Partly due to the fact that I am really bad at doing it! 

My most current problem is with studying at university. I am due to be completing my final year of psychology this year and have been having issues with the uni I am currently enrolled in (which is a different uni from my previous studies). Since I am still in the negotiation process I will not name them just yet and hope they do the right thing and support me.

Now I study via distance education as it's easier for me with my sight, with working and with life in general. As a post graduate, I don't really want to be on campus but rather spending the time furthering my career. Even though I am studying distance my course has residential schools as a component, four lots in total over the year. The campus is not local to me, it's about a three hour drive from the city, which of course I can't drive, about a seven hour train ride (into the bush) or a small plane flight (although the airport  is closed at the moment). 

My issue stems from two things - my vision and my anxiety. It is hard for me to travel with my vision and there is no way I feel comfortable getting a train to somewhere I have never been on my own then somehow navigate to the campus and to a hotel. I can't even read a sign! I'm still new to this whole vision impaired experience and travelling on my lonesome is not something I feel comfortable with yet. I'm a small girl and haven't learnt kung fu (but don't worry I'm in the process of that) so I feel very vulnerable. And I'd have to do it four times over the year. I could get someone to take me but frankly I don't have anybody who could take weeks off work to spend in a country town while I sit in lectures for a course I'm supposedly doing through distance education.

So you'd think I have a fairly good argument to be supported to participate in another way right? Well apparently not. I've had numerous comments from the disability officer that they have another student who is 'fully blind' and goes on campus and why can't I study at another uni? Oh ok, too hard for you so palm me off? As for the 'fully blind' comment (said more than once), can you be any more condescending? You don't know my experience or my history, you know nothing about me! You don't know how I cope or all the effort I'm making to deal with my diagnosis and live a normal life! 

I was on the verge of giving up. I had a chat with someone who is involved in disability research and she gave me some useful resources to support my case and present to the uni. One of which was the UN Convention on the Rights of Persons with Disabilities  which Australia is a signatory and must abide by. The main points to note in regards to education is that every person has a right to education and 'reasonable adjustments' should be made for a person with a disability.

I was still wary of picking a fight as such with the uni, and was not keen for any confrontation. Then I thought, I have to be more assertive and fight for myself. So I put together an email quoting the above and specific guidelines relevant to psychology and sent it off. 

The response I have gotten so far is.. well iffy. I'm not really sure where it's heading. Regardless of whether I succeed at least I can say I tried and I made others think of the individual needs of someone with a disability.

If you are in the same situation don't give up, try your best to be assertive and stand your ground. If you get really stuck there are disability advocates who can help and speak on your behalf. We have the same rights as everybody else and organisations need to be made aware of the different needs which are necessary for success. 

Updates on the outcome of my situation to come! 

Thursday, January 15, 2015

Real People # 1

In the coming months I will be sharing stories of others living with Stargardt's and other retinal dystrophies. These people have all inspired me on my journey and no doubt will inspire you too!

First up is Jenna!

Jenna Lawson, 22, Florida, United States

What is your diagnosis and how does it affect you?

In March of 2011, I was diagnosed with Stargardt disease, a type of retinal dystrophy. This disease impacts my central vision and, at this point, I have no central vision left. When I first began losing my vision and I was told that neither glasses nor surgery would fix my problem, I was very scared and upset. At that point in my life, I was a year out of high school, I wasn't going to school (even though I really wanted to), and I was trying to enroll in a dental assisting program that I thought would bring some direction to my life. I had successfully enrolled in a program and was due to start in a few days when I received the news about my eyes, so I had to withdraw from my classes until I figured out what was happening with my vision. In addition to feeling scared, I felt angry because all I wanted to do was get my life on track, but all of these events were preventing me from doing so.

I, thankfully, received an official diagnosis two months later, and I remember thinking: "This is my life now. There is no looking back." I was so relieved to simply know what I was dealing with that acceptance came very easily. I was so eager to pursue my life that something like Stargardt was not going to stop me. Funny thing is, Stargardt disease turned out to be one of the biggest blessings of my life because, not only did it enable me to attend school, but it helped me realize my true strength and tenacity. It's strange how something that, at first, seemed so negative turned out to be such a positive and motivational experience.  I definitely encounter challenges from time to time, but I have accepted my eyes for what they are and this alone has given me great peace.

Where do you currently work or study and how do you find it with your vision impairment?

Currently, I attend the University of Central Florida, and I'm pursuing a Bachelor's in Social Science Education. My goal is to become a history teacher. Before UCF, I attended Weber State University in Utah. When I lived in Utah, I walked three miles to the nearest bus stop, in the cold and the snow, and then rode the bus for an hour to school. I kept getting sick because of the cold and I hated the long commute, so I moved to Florida where I'm able to wear sandals and shorts almost everyday. I take classes online, and I also take classes at a location that is about three miles from where I live. I ride my bike to and from this location, rain or shine. School is my job, at the moment, but I spend a lot of time volunteering at an elementary school. I ride my bike there, as well, because it's close to where I live. If I have to go anywhere else, like the grocery store or the dentist, I have to have a friend or family member take me.

What hobbies do you have?

I love to paint and draw, write stories, read, spend time at the beach, hang out with friends and family, watch movies, travel,  study world history, and belly dance. I continue to enjoy all of the activities I did before I began losing my vision. I started belly dancing about a year ago because I wanted to improve the health of my spine (I spend a lot of time hunching over notes and textbooks because I have trouble seeing).

What has been the biggest hurdle you have faced?

The biggest hurdle I have faced has been transportation. Transportation has been the most persistent and frustrating problem. In the United States, there is sort of this expectation that anyone 18 or older should be largely dependent on themselves. Lack of transportation makes it so you have to depend a lot on other people, and a lack of transportation can also limit your access to job opportunities. Learning to accept a state of dependence is difficult, and it can sometimes feel demeaning when you live in a culture that places so much emphasis on independence and "finding your own way". Not being able to provide transportation for yourself also shows who your true friends are; those that truly care will undoubtedly find the situation tricky, at times, but they will be there to support you no matter what, whereas others will see you as a burden and will disappear from your life. I take this hurdle one day at a time. As far as relationships and job opportunities go, I have come to view my transportation issue as a filter. In other words, opportunities and relationships will continue to be in my life, regardless of my eyesight and the challenges I must face on a daily basis.

What's the best advice you'd give to others in this situation?

I have learned some very important things over the past few years that I would love to share:

  • Acceptance leads to success. Looking back on what used to be doesn't make things any easier, and it most certainly will not make you happy.
  • Be your own advocate. If you need help, don't be afraid to let people know. There are so many resources for people who are visually impaired. It's truly an amazing experience when you connect with people who are dedicated to your success and well-being.
  • Realize that things could be a lot worse. Honestly, I'm lucky to have Stargardt because, while I may lose an extent of my eyesight, I will never lose all of it. There are people out there who have suffered much worse and, amazingly, they have powered through it and come out on top. These people have been my greatest source of inspiration
  • Never let others minimize your frustrations, challenges, or experiences.
  • Pursue your interests and continue to live your life.
  • Honor your sadness, frustration, and fear, but don't allow these emotions to consume you.

Thanks Jenna for sharing. You have been an amazing friend and support from the other side of the world!

Here are some of Jenna's beautiful artworks. I've previously shared some of her work make sure to also check it out here.

If you want to connect with Jenna on Facebook click here.

Tuesday, January 13, 2015

Let's talk anxiety

I've brought this issue up previously, and I think it's time it comes up again. Mental health is something I am extremely passionate about and anxiety is something I have been dealing with now for years.

I experience panic attacks. For those of you who don't know or have never had a panic attack, it is probably the worst feeling you could ever feel. There was a study done with people who had experienced both a heart attack and panic attacks which found that panic attacks were far more frightening and disabling! I hope this puts it into perspective a little! 

When I have a panic attack, it feels like extreme fear, and my 'flight or fight kicks in'. I'm usually more of a flighter, I get out of the situation as soon as possible to reduce the feeling, but this only feeds the panic and makes it worse causing me to avoid.. well life. 

The physical sensations can vary but include dizziness, trembling hands and legs, numbness in the extremities, dry mouth, rapid heart beat, shallow breathing, blurred vision, churning sensation in the belly, rapid bowel movements - pretty much everything in the body is affected. 

My attacks got even more severe when I had to stop driving. I had lost my independence. I was holding on to that last bit of control I had, I couldn't handle being a passenger in the car and was always the driver. I wasn't venturing far from my home at the time. After I realised it was too unsafe to continue to drive I knew I had to stop. At the time I also quit my job because of my vision issues and anxiety. I decided that it was time for me to start from scratch, and so I hit rock bottom.

Rock bottom felt like a big, dark hole that engulfed me from every direction. All the light was sucked out and I was stuck, too scared to move forward. I got to the point where I could no longer leave the house and even looking out the window brought on an overwhelming feeling of claustrophobia and fear. 

I knew what I had to do, I had to face it. At the time I was studying a subject called Behaviour Modification (awesome subject) and was learning about desensitization. My avoidance was feeding the panic monster within and the monster was winning. I didn't want it to win. I wanted my life back.

So I started small, I would walk down my driveway (which is like a street in itself) and start down my street. At first I would only get ten houses or so down before I started to feel panic, then I'd turn around and come back. I kept doing this until it got a little easier and then went further. 

I was overwhelmed by the traffic on the busy road at the end of my street. There was too much for my failing eyes to take in and process and everything was a blur to me. It made me feel nauseous. So I would sit on the bus stop on the main road and force myself to breath and take it all in. Slowly I became more comfortable with the rapid movement and the little of it I could process. 

Next was getting in a car with someone else at the wheel. Now I'm a HUGE control freak, if I could control the weather I would! It was hard enough just to get inside the car with someone let alone actually drive somewhere. It also comes down to trust. I had to trust someone else to be my eyes. Miss Control Freak had to give up her control! Let's just say there was a lot of tears, screaming and emotions flying around when I tried to do this with my friends and family. It started with going 100 metres down the street and coming back. Anyone I go with is now a pro u-turner (as we say in Australia, 'chuck a u-ey'). 

This is a slow process and I am by no way back to normal. It tests your patience, your courage, your bravery and your belief. I am slowly working my way back, and I want to emphasise that this process is slow and draining. It doesn't happen overnight. There are always times when I feel like I'm going backwards but I need to keep positive and push through. Everybody has bad days and I know I need not take it to heart. Just get up the next day and try again.

Unless you have been through a similar situation, it can be hard to truly understand what it's like. Time and time again I've been told to 'just get over it', 'try harder' and 'just do it'. If it was that easy do you not think I would?! Mental illness is a REAL illness, it's not for attention, it's not anyone's fault and it is just as disabling as a physical illness, if not worse. Most importantly, it should not be something that we are afraid to share, after all, in Australia 1 in 2 people will experience anxiety or depression in their lifetime. Support is the key.

Having a double whammy of illness is hard. But you're not alone. There is help available and most of all support. I get a lot of emails saying that my blog provides 'inspiration', but it's everybody else who inspires me to keep going and keep fighting. Community is one of the strongest forces to produce change and ensure happiness.

Let's continue to stick together to make a difference and keep living our amazing lives!

Monday, December 1, 2014

Vitamin A and Stargardt's - Part 1

The only advice I was given when diagnosed with SD was that vitamin A was causing my vision loss and to not take supplements with Vitamin A. This totally contradicts the widely known fact that Vitamin A is essential for eyes. It's not that this fact is incorrect, it's that it doesn't wholly apply to SD. 

Since I love my science and research, I took it upon myself to spend my spare time reading every published article on SD and vitamin A to find out more about the mechanisms at play in the eye causing problems and what evidence exists to support these theories. The earliest article I found was published in 2008 and all used mouse models for investigations.

A paper published in Cell Death and Disease this year gives a good overview of the mechanism leading to vision loss and how Vitamin A is implicated. Essentially, SD is caused by an accumulation in the RPE of Vitamin A dimers (dimers are two molecules joined chemically), which are known as A2E (shortened version of the chemical name). Using an in vivo model, they found that increased A2E led to greater cell death. A word that always comes up when talking about SD is lipofuscin which is the yellow-brownish pigment deposits seen on a retinal scan used to diagnose the condition. Tying it all together, A2E derived from vitamin A is a retinal lipofuscin which is causing the damage and subsequent vision loss. These findings support earlier studies in mice such as articles n the Journal of Biological Chemistry and Investigative Ophthalmology and Visual Science which both looked at the effects of vitamin A, SD and mice demonstrating that higher doses of vitamin A led to increased lipofuscin development. 

Another paper in the Journal of Biological Chemistry also used a mouse model to investigate the effects of A2E and  also oxidative stress. It was found that A2E increased inflammation in the RPE, which is an important finding for prospective treatment solutions.
There are no studies performed in humans on the effects of vitamin A probably because it is not exactly ethical to get a group of SD patients and give them high doses of vitamin A and see whether they deteriorate! Despite this, the research is available to support that vitamin A is indeed causing damage in the eye and leading to vision loss. The continuing research has led to greater understanding on the different components at play and, no doubt, will help in the future to develop therapies. 

So now we know vitamin A is not our best friend, where do we go from here? Part 2 will discuss diet and vitamin A and how we can ensure not to overload vitamin A and contribute to the SD process.

Wednesday, November 19, 2014

Second chance for Mr Cane

I have been walking a lot more since unwillingly giving up driving. I have grown in confidence with walking alone but I still find road crossing difficult. I'd given the cane the flick because we just weren't getting along. I haven't used it in some months now although there has been a little voice in the back of my mind telling me to pull it out again and give it another go. 

Yesterday was the big day when Mr. Cane got his second chance to win me over. I must admit, he did a damn good job at it! I went for a walk with a friend who hadn't encountered anyone using a cane before so it was interesting for her to see how it was used and the reactions of others. 

One of the big issues I've been having is that when I'm walking, others have no idea I'm vision impaired and if I make a mistake crossing they will think I'm an idiot. I like the fact the cane is a way of saying "Hey, I don't see good, look out for me". This was evident when we crossed a main road, without traffic lights, but with an island in the middle (so we could go half the road at a time). This particular spot had been an issue for me because the road is so busy I can't simply rely on my hearing and limited sight. In a way the cane was like my indicator signal of a car. People knew to be mindful of me. We had a great experience, each time we crossed (we did it a few times!), when we were on the island, a person would stop the traffic to let us cross. It really was a testament to how kind people can be. These small gestures increased my confidence with crossing roads and also gave me more trust in those around me. 

We also noticed people's reactions when walking toward us. Each person we passed, even someone with a pram, moved off the footpath out of the way to let me pass. I don't know what I expected, that people would walk into me or make comments, but experiencing it first hand made me feel more at ease with the whole idea of using the cane and reduced the stigma to using it.

Mr Cane and I have gone on another date today, with similar success, and we are on the road to a happy and long partnership. Up until this point, I wasn't ready to accept the fact I may need extra help getting around and there is nothing wrong with that. Now is the right time for me and I will embrace it and continue to gain more confidence and independence.