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

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!