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: