6 Month Checkup

It is crazy to think it has been 6 months since I had surgery. Life has been moving extremely fast for me. I feel my eye sight has improved slightly for light/dark sensitivity. I actually probably consider my treated eye my dominant eye now. In the last 3 months our daughter turned 1, now is running and climbing everywhere. Our son is about to turn 3, now he talks all the time and loves riding his bike. My work has drastically changed. In the last 3 months, I have traveled about every other week to Mexico or somewhere else. I have high hopes that travel for work will slow down greatly as a project schedule has changed, which could keep me at my desk for the next 6 months with minimal travel.

I flew to Philadelphia on Sunday Sept. 13 to have eye testing on the 14-16. I had the strangest thing happen on the flight out. The flight attendant saw me pre-board with my cane and asked if I needed assistance. I politely said no thanks. Not more than 15 minutes later, the same flight attendant quietly and slowly asked if that thing with the wires (my folded up cane) in my pocket was an explosive device. I said no. The flight attendant said oh, OK and left. It scares me that she would think that, ask me and believe my response. Then again, if she followed procedure security would have been called and I would have been dragged off the plane and taken to a special room.

I got to complete the micro perimetry test twice. The Dr. wanted to validate the good results he saw. The pupilometry machine was not working, so I was asked to come back on Friday Oct. 2. I was already flying back from Mexico on Oct. 1, so I got a flight after I got through customs from Dallas to Philadelphia. Again, I feel I am traveling too much. The pupilometry test showed good results as well.

Overall all the tests point to a minor improvement in my light sensitivity in the treated eye and no degradation of peripheral field. So far in me, this proves that this is a viable solution to stop visual field degradation. If you followed the results of the Oxford trials, the 6 month checkup is where they published results and my results are in line with the results that they had. I say minor improvement because it was quite minor. This minor of a reading  is pushing the limits of the detectable step change that the micro perimetry equipment has the capability of measuring. The scale is also a logarithmic scale which is non-linear and magnitude based. So if you are a math nerd like me, then you know that it is a base ten scale. One step is 10 times more and 2 steps is 100 times more. This is similar to a pH scale. Hope I haven’t lost you. I will just say I am extremely happy with my results and the possible improvement in light sensitivity is the best case scenario I could hope for. This trip is one of the things I will always remember for the rest of my life. It ranks up there with the Dr. giving me the phone call to be part of the trial.

I want to thank all the Doctors, Medical Staff, the Choroideremia Research Foundation(CRF) and all the charitable donations that have made this clinical trial a reality. Please think carefully about the charities you donate to that they make a difference in people’s lives. I know I make donations to curechm.org and I hope you can see the things that they have already been able to accomplish. The journey for the CRF is far from complete and your donations would help to cure this disease. I have added a “donate to cureCHM.org” link at the top of this webpage if you would like to make a donation.

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4 thoughts on “6 Month Checkup

  1. That is great news! I am so happy for you.
    These trials are criticalMy important on the road to a potential treatment of CHM. As you said though, the Road for the CRF is long from over. We are still funding research that will hopefully one day replace the site that is already lost for so many of us. The sciences there. The only thing holding the science back is the funding. It has been because of the generosity of individuals that we are where we are today. The fight is far from over.
    Your news is incredible and combined with today’s announcement of positive results from the LCA gene therapy trials does give us all energy To keep pushing the science! There is hope for a cure!

    Liked by 1 person

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