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Treatment Information

Many forms of low vision and blindness in kids and adults are caused by gene defects. Common forms of hereditary (Mendelian) blindness are due to photoreceptor dysfunction or death. Retinitis Pigmentosa (RP), Leber Congenital Amaurosis (LCA), Cone Rod Degenerations, Stargardt Macular Dystrophy and many others are called Inherited Retinal Degenerations or IRDs.

Previously, IRDs were thought to be completely untreatable, nothing could be done. Now we know that this is NOT true. IRDs are in fact, at least partially treatable, as we have already seen remarkable improvements in vision, retinal sensitivities, mobility and patient testimonies.


Current Treatments:

 1.     Slowing down by oral antioxidants: (available in pharmacies)

a.     Vitamin A: take 10,000 iu per day and check your liver yearly with your doctor.

b.     Lutein: take 10 mg per day (20 and 40 mg is probably safe)

c.     Omega 3: take EPA, DHA and ALA. Adults take 1000 mg, kids take 250 mg

d.     Blue berries: take 200-400 mg daily

e.     NAC: take 600 mg per day

 

2.     Possible safe alternative treatments (these are still being tested)

a.     Acupuncture in Toronto: https://avenueacu.com/

b.     Tran-corneal electrical stimulation therapy (TES) in Berlin: https://www.restorevisionclinic.com/loss-of-vision/retinitis-pigmentosa-treatment

 

3.     Glasses for color blindness

a.     https://colormax.org/color-blindness-treatment/#close

b.     https://enchroma.com/

 

4.     Scientific treatments in clinical trials with early success (now 8)

a.     Gene augmentation examples: RPE65, CHM, RPGR subfoveal surgery

b.     Gene editing: examples USH2a, CEP290, USH1c intravitreal injection

c.     CNTF neurotrophic factors intravitreal device

d.     Oral drugs: examples 9-cis retinoid oral

e.     Anti-complement drugs: example Zimura, anticomplement 5 factor injections

f.      Stem-cell treatments: example RPC, retinal progenitor cells subretinal surgery

g.     Optogenetics: channelrhodopsin surgery

h.     Artificial vision: Argus 2 device surgery

 

5.     Website and links for more treatment and research information

a.     https://www.mcgill.ca/ophthalmology/research/genetics-research

b.     http://www.koenekooplabs.com/dnn/en-us/home.aspx

c.     https://www.fightingblindness.ca/

d.     https://www.cliniquepourenfants.com/

 

6.     Donations

a.     https://fondationduchildren.com/en/

b.     https://fightingblindness.donorportal.ca/Donation/Donation.aspx?F=1689&T=GENER&L=en-CA&G=307&NFP=1&_ga=2.55107755.160915908.1574608667-1020737984.1574608667

 

 

Prepared by Robert Koenekoop MD PhD FARVO

Contact fax: 514.906.8081 (at the TCC, The Children’s Clinic)


Contact Email: fightingblindness@cmbmed.com