Disclaimer, i’m not a doctor nor an health professional so the content posted can be inaccurate, incomplete or misleading and comes with no warranty whatsoever.
I’m a 40 plus years patient of glaucoma, and specially for you that were diagnosed with the disease and reached this little corner of the inter webs, this is a message of hope. The most likely outcome is that you CAN preserve your eyesight and avoid blindness IF you are diligent and follow this simple set of rules :
1 – Find a good ophthalmologist specialized in glaucoma. This is vital.
2 – Fully, strictly and methodically commit to the treatment and follow-up plan. Like the Nike slogan, just DO it.
3 – Don’t be afraid to step it up. If medication is not doing it anymore there are lasers, if lasers are not enough there are surgeries. Don’t procrastinate.
4 – Never, ever think glaucoma is “controlled”. It’s a dynamic disease, it evolves. So, never, ever back down.
5 – Take good care of your general health and keep a positive mindset.
Return back to rule #1, rinse and repeat.
1 – What is glaucoma?
Unfortunately glaucoma is the second cause of irreversible vision impairment and blindness in the modern health care available world (first is AMD if you are wandering). If all glaucoma patients followed the above rules is my strong conviction that we would drop several positions in the dreadful ranking. So if you are a glaucoma patient please enforce yourself to comply with these rules, if you are a friend or familiar of someone with glaucoma please make sure (and help) him or her to comply.
It’s very important to explain WHY this happens? Why does a manageable (in most cases) disease causes so much havoc? Because in it’s most common form it’s a sneaky bitch.
The hallmark of glaucoma is damage to the optic nerve, the death of the very delicate RGC neurons in the back of the eye . Yet, (in the most common form of glaucoma) it happens slowly, painless, and the eye/brain has compensating mechanisms that can hide it to late stages before having visual clues. So, it’s very easy to relax about it, even after being diagnosed with, you feel good, have no pain, as long as you can tell you see the same as the day before. But nerve cells are dying and this loss of nerve tissue is irreversible. Then the day you feel something is not quite right with your vision, or feel discomfort or slight pain in the eye(s), or halos around lights at night and seek for help, you already put yourself in a bad situation and squandered a lot of nerve cell capital.
Please take this advice from a 4 decade plus glaucoma patient, don’t wait for symptoms, don’t be passive, don’t “listen” to your body on this one. There are only 2 known risks factors for glaucoma progression, age and ocular pressure. Nowadays is impossible to de-age you, but with medical help you can, should, and must, maintain the ocular pressure at your own safe target.
Now trust me, don’t expect to control your IOP by feeling, looking outside the window, flipping a coin, or any other method except for tonometer reading. Again, if you eventually feel something is wrong most probably things are quite wrong and irreversible damage has been made. So between your doctor appointments, take regular readings at an optician. But beware, if your IOP readings are stable don’t even think about skipping doctor follow-ups as glaucoma is dynamic and to halt the disease progression your personal target ocular pressure can change over time.
My advice is to act methodically and as effortlessly as possible, because this is not an 100 meter sprint, it’s an ultra marathon.
2 – What lifestyle changes should we do?
Glaucoma is not a lifestyle disease, but changes in your routines can help. First and most important, whatever you do, DON’T stop or change your treatment and follow-up plan. Write this in stone in your head.
Always have a critical mind. Don’t trust a random person just because is on a Youtube video or on a random blog post. Try to have some grasp, of the beneficial (or detrimental) mechanism of the proposed action. Dig for references about the person, dig for published studies and consensus, do your due diligence.
Don’t be fooled or paranoid, we live in a age that information flows freely and fast, if someone had a simple secret silver bullet to control ocular pressure and treat glaucoma, that information would spread like wild fire on dry straw… so, if someone starts with the likes of “do this simple thing every morning to get rid of glaucoma” raise a big big big red flag.
Keep always in your mind rule #5, what is good for your health is also good for glaucoma. Good nutrition, good repair sleep and regular exercise is always a safe bet. Don’t limit yourself or you life to unfounded beliefs (like I heard someone say to somebody that you shouldn’t eat this, or drink that, or do this or do that…), in doubt about something consult with your biggest ally (the person in rule #1). Live a full positive life.
Some practical personal insights about every day life.
Computer screens – do make the hourly pause and look outside the window, as far as you can. For extra comfort use inverted color schemes, black backgrounds on white letters.
Yoga – the routine should be altered and exclude all downward facing positions. A great rule of thumb is that your head should be always above your heart.
Weight lifting – Again, head always above the heart. Switch flat benches for the inclined variations. Don’t hold your breath, inhale and exhale normally. When the goal is muscle failure, rather than very heavy loads and low reps achieve it with a bit more reps (personally because of glaucoma I never go under than 8 reps, but probably an higher number is even better).
These and many other glaucoma lifestyle choices insights, please take time and watch this webinar (it’s the best that I’ve found online):
3 – The mental part of it.
What the MD doctors don’t speak is the mental part of it. And let me tell you this friends, it’s a struggle. You must find motivation within each and every day to correctly apply the medication, do the doctor appointments, take pressure readings between appointments, submit yourself to surgeries if needed.
And I warn you, it gets much tougher and depressing when your vision gets impaired (so please do the best you can to preserve it). It’s really tough to properly navigate with bad eyesight in this world made for people with good vision.
It’s mentally tough when other people (with lack of knowledge) judge you like the lazy or cheap person that just doesn’t want to go get a new pair of glasses. It’s mentally tough when most of the non spoken information is lost when you loose the ability to clearly see the back of the eyes of your interlocutor. It’s mentally tough when you don’t recognize or mistake people on street or at coffee shops. It’s mentally tough when you can’t read stuff on menus. It’s mentally tough when you can’t see your team score in the TV. It’s mentally tough when you can’t drive. Etc, etc, etc….
You should/must train and work your mind to find strategies to carry you on and over the daily challenges and difficulties. Be resilient.
Some personal tips that can help the mental part: explain clearly your status to you family and close friends, specially what you feel uncomfortable to do because of your vision status, they will help you. Don’t be shy to ask for help to strangers when needed (don’t say sorry, say please). When somebody makes the dumb “why don’t you get a new pair of glasses” comment, relax, deep breath, look back and choose one of these options a) take a bit of time and explain that glasses simply bend and correct the light to the correct refraction point in the retina but don’t fix the sensitivity nor magnify (that’s a telescope…) or else my personal favorite b) unfortunately there are many eye conditions that can’t be corrected with eye glasses, don’t act like an ignorant jerk… and move along.
Very very important insight, be generous and grateful, and do feel good about yourself.
4 – A look into the future.
I think it’s safe to assume a progression rate in advance of medicine, science and engineering over the years, then the only logic conclusion is that one day in the future there will be a cure. So, the question to ask is how long are we from the cure? And can we help accelerate the progression rate to a cure?
I’m not a futurologist nor a researcher nor a doctor, but I’m an optimist back from a time that the arsenal to fight glaucoma was much smaller than it is today. Sure there are very hard problems to solve this puzzle, particularly to discover a way to regenerate or replace the dead RGC neurons and their proper long axons connections, hopefully restoring visual function.
RGC neurons are part of the central nervous system (like neurons on the brain, or motor neurons on the spinal cord) these cells do not regenerate after injury in adult mammals.
Still, research and science is being made on this and related topics, knowledge capital is compounding, novel tools being developed, genetics is starting to pick up, all this factors are converging and when time arrives for clinical tests what better nerve fiber to test than the optic nerve? It’s the only one (to my knowledge at least) that you can simply take a look at it trough a natural window (the cornea).
Ok, all that is fine but when a solution? 100 years? 50 years? 20 years? 10 years? Nobody knows.
First step is to believe it’s possible. The more brains believe in an outcome, higher the possibility of the outcome, because we tend to shape reality to suit our expectations. This mindset will transform you from a passive observer to a person that wants to shape the future reality.
Second step is to take action, how can I help? How can you help? If you are a medical researcher, engineer, or other directly involved in the daily grind of building the knowledge of the science building, thank you, congratulations on your career choice, and the best of luck on your endeavors. Now, for the rest of us there are only two choices. Donate to non profit entities that are promoting glaucoma research, or invest in medical research companies working in glaucoma or related problems. Money is a database for resource allocation across time and space, either way (donating or investing) you are simply allocating resources to solving this problem.
In the non profit sector, there are three foundations committed to glaucoma research, San Francisco based Glaucoma Research Foundation, New York based Glaucoma Foundation, and the smaller Dallas based Cure Glaucoma Foundation. In the latest IRS fillings (here, here, and here) we can find out that Glaucoma Research Foundation total revenue was 5,777,174 USD and spent in grants 1,863,969 representing 32% of money channeled to research. The Glaucoma Foundation revenue was 4,297,114 USD and channeled 784,037 USD in research grants representing 18% of allocation to research. The Cure Glaucoma numbers are, 219,177 USD / 57,042 USD at 26%.
Also a negative note for the compensation amounts payed to direction / amount to research. The president for Glaucoma Research Foundation, Mr Thomas M Brunner received 251,243 USD, representing 13% of the research money and 4% of total revenue, meaning for each 1 dollar donated 0.04 cents go pay Mr Brunner and for each dollar spent in research there is a correspondent expenditure of 0.13 cents in Mr Brunner compensation. Ms Elena Sturman the president of TGF received a total compensation of 375,279 USD representing 48% of the research money and 9% of total revenue. Mr Mike Kettles from the CGF earned 66,523 USD representing 115% of research and 30% of total revenue.
These numbers are pretty much self explanatory, and also the flagship program Catalyst for a Cure, and overall online presence and frequent updates and intiatives in my mind the only rational recipient for a donation is the Glaucoma Research Foundation.
In the business front, we have the usual big pharma suspects, like Alcon, Santen, Roche, etc… doing their suspect everyday work, developing and testing new drugs, filtration devices, implants (all of this very important and life quality enhancing). But in my mind breakthrough innovation will come from smaller company centered in the booming genomic space. The problem for investing (basically seeding money at this point in time) is that there is literally hundreds of small listed research / bio sciences / therapeutics, so it becomes very difficult to know in who to place your chips. Also, there is strong possibility of connectivity, who knows if a breakthrough in spinal cord injury, Alzheimer, or other novel treatment can’t be applicable in Glaucoma or vice-versa.
Thus the choice is rather obvious a genomics & biotechnology ETF, allocating your investment to a basket of several companies picked by professionals. There are (at least) 3 funds meeting the criteria ARKG, GNOM, HELX, I believe that all of them will be a long term great investment (nfa), and better yet is the feeling of actively contributing to solving many nasty diseases.
I’m long on ARKG, but nowadays from the three ETFs I would rather choose GNOM over, lower expense fees, but more important the stocks portfolio is rather more centered on pure genetic research and engineering while ARKG has some dubious choices for a genetics research and medical care advance fund theme, Teladoc (telemedicine), Uipath (software automation), Nvidia (chips manufacturer) relevant mentions according to the latest fund holdings fillings.
Besides the ETFs I would like to make an honorable mention to Lineage Cell Therapeutics Inc (AMEX: LCTX) formerly known as Biotime Inc, a small (but curiously old for the regenerative medicine space with 1990 as the incorporation year), that is pioneering the transplantation of specific cell types produced in the lab. Their OpRegen program that is attacking dry AMD by replacing the RPE cells. And also the OPC1 oligodendrocyte progenitor cell therapy program for severe spinal cord injuries. Both are at clinical research state, updates here and here, and both actually already have promising results, OpRegen has actually demonstrated retinal tissue restoration and vision improvement that was considered impossible in the medical literature. Even if none of both programs specifically target glaucoma lost RGC neurons they are a step forward in the right direction. I think this is worth to be funded, so I’m long in this company.
5 – Fund raising
If you have read this long post and reached this point, you are indeed an hero. I ask for your help. I’m raising 200 USD to be donated to the Glaucoma Research Foundation. I have setup a crypto address for this, and put in the first 100 USD. When eventually reaches 200 USD will withdraw the money, wire it to the Glaucoma Research Foundation and post a proof of it.
Please contribute to help fighting this disease. Send USDC via Polygon network to the 0x464F6556C2BCA84b78c6374988f25ee1793250De address.
I choose crypto, because it’s border less and the cheapest way to move money in the world (a typical Polygon transaction cost is just a couple of cents), it’s fast, accessible to everyone with an internet connection, and it’s fully verifiable.
You can check at this link all the transaction history for this address:
https://polygonscan.com/address/0x464F6556C2BCA84b78c6374988f25ee1793250De
Big thank you from the bottom of my heart to each and every person who helped me in this fight, specially Dr. Fernando Vaz at Hospital Fernando Fonseca, Dr Nuno Alves at Hospital Descobertas, and the late Dr. Pedro Abrantes at Hospital Egas Moniz. Thank you so much.