I wasn't that Lucky…but, I was Lucky enough!

I’ve contemplated getting involved in clinical trials for LHON treatments in the past. I’ve never gotten involved in one, for one reason or another. (i.e. location, travel, qualifications, schedules, etc.)

Well, one of the newer clinical trials is being overseen by one of the world’s top Neuro-Ophthalmologist, Dr. Alfredo Sadun. He is at the Doheny Eye Institute in Pasadena, CA. With his office about 2 hours from my home… I thought “Hmmm…Ok, what the hell! They need people to do these studies to find a treatment/cure…. Maybe I should look into it!”

Screen Shot 2016-06-27 at 12.14.50 PMI made the call. I went for a consultation & screening to find out if I would be a good candidate for this relatively new LHON clinical trial involving the use of eyedrops over a period of time. All I knew is that they were looking for folks who had the mitochondrial genetic mutation #11778, had become affected (had vision loss) within the last 10 years, and fell between the ages of 18 to 50 when their second eye was affected. Okay, check, check, and check! I fit those requirements! We now needed to figure out if I fit ALL the other medical mumbo-jumbo criteria that would allow me to participate.

The screening consisted of many tests to evaluate my vision and optic nerve health. I did several visual field tests…Yuck! and had lots of photos & scans of my optic nerves domne. I’ve done them all lots of times in the past. Nothing new to anyone who deals with this disease.

As I was waiting between tests, one of the assistants said to me… “Dr. Sadun said that you gave quite an impressive talk at the LHON conference!” Whaaa? He said THAT!?! For realzz? Ahh…I was totally flattered! That definitely made me smile throughout the duration of the testing!!

So, things were going pretty good! I mean, I’m only about 3 years into this LHON gig, my optic nerves can’t be thaaat bad, and Dr. Sadun is talkin’ me up with the staff. Not gonna lie, I was feeling mighty positive at that moment! Hey, whadda ya say we finish up this day! Just assign me a seat on that clinical trial train! Give me those eye drops…and I’ll be on my merry little way…! I was in the middle of my own mini magical moment, when Dr. Sadun AND another top Neuro-ophthalmologist, Dr. Valerio Carelli from Italy, entered the exam room. OMG… I was getting a two-for-one! Two of the world’s BEST were right in front of me! 

Dr. Sadun didn’t really waste any time after our “Nice to see you again…” greetings before he gave me the news. After reviewing my test results, I did NOT qualify for the trial. Unfortunately, my optic nerves are not as healthy as they need to be to participate. Oh. Didn’t see that one coming. 

I’ll admit, I felt a bit disappointed. I had made the decision to do this, and I really wanted in.  I know a lot of people who want in on these trials and are not able to do so. As I’ve read many times on social media, some folks in the LHON community believe that because a person has the common mutation number, falls within the age range, and affected time period, they are the lucky duckies. The lucky duckies who get to take part in the current LHON clinical trials. Well, that’s obviously not the case! The state of one’s vision and optic nerve fibers is a huge factor in snagging a spot in the various trials. There’s just no guarantee.

13450296_10154133756821422_3908413424478962986_nI wasn’t that lucky in getting a spot in the trial…but, I was lucky enough to take home some things that I’ll keep for a while. One, I will never have to wonder whether or not I woulda, shoulda, or coulda qualified for this. Two, I had the opportunity to sit and talk with two of the world’s top Neuro-Ophthalmologists about my LHON history. Nice! Right? Well, here’s the best one! Three, Dr. Sadun made a point to tell me himself, that he was really impressed with my personal perspectives on “Emotional Adjustment” to vision loss at the recent LHON conference. (Photo of panel to left) He felt that my ability to share my emotional experience with such spirit was well done. As I spoke, he noticed that the attendees laughed with me as I added relatable humor to my early struggles. He was very complimentary and I was thrilled to hear all this from him. Wow and Wow!  I don’t remember his exaaact words, but, that’s pretty damn close! What a kind gift he gave me, for being…well, just ME! 

Despite feeling discouraged by the news of that day… I feel even more encouraged to continue to participate as I already do in the LHON world. With GGB fans all over the place, including in a small exam room space… this girl has got to keep running the race!! I actually hate running… but you know what I mean!! 

8 Comments on “I wasn't that Lucky…but, I was Lucky enough!

  1. well, honey, i certainly am not surprised….he shoud have known you back then, always funny positive and witty,, artistic, fun and beautiful inside and out….sorry your hopes were daunted but by god, you got their attention…mine too


  2. well, honey, i certainly am not surprised….he should have known you back then, always funny positive and witty,, artistic, fun and beautiful inside and out….sorry your hopes were daunted but by god, you got their attention…mine tool


  3. Friend- there WILL be a study that will be the right one for you– i know there will be. And you are making amazing connections that will lead to that. Meanwhile, you are changing the world and helping others you never even meet, and to those of us that know you, you help us too. So each of these connections is leading to soenthing, i can feel it.


  4. You keep running with
    John Walters and others! You inspire us all pretty lady!


  5. Maria, you may not qualify for the clinical trial but, like Jeremy, you have a gift: you inspire people with your positive attitude. Keep it up!


  6. Maria:

    Another great post! I love how candid your writing style is. Thank you for sharing your mini-trek down the clinical trial trail. I’m sure there were mixed emotions. I too struggle a bit as my mutation is rarely identified (14484) so if I ever qualify, it’s only for the research trials. That being said, I am very thankful for others to participate as a cure for 17797 will resolve mine…so I’m told. So, chin up and keep fighting the fight with a positive attitude! Thanks again for all that you do.


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