I doubted whether I should put a question mark behind this title, but no. A healthy and balanced diet is important for everybody. But for people with Usher syndrome there is perhaps a little more to it. To date there has been little research done on the effect of diet on Usher syndrome, several doctors did give us specific diet advise for Jackson. Even if there is just the slightest indication that I can improve and/or prolong Jacksons vision through diet, you have my full attention!
I am a 80/20 girl. I try to eat healthy 80% of the time, so I can do what I like the other 20% of my time. I have never smoked, drink very rarely and love my daily runs. I don’t believe in diets, I believe in balance. I have always liked cooking and been interested in food all my life. As a kid and teenager, my mom let me experiment in the kitchen as much as I wanted. I am sure I have my love of food from her.
Ever since Jackson started eating solid foods, I have prepared him fresh meals. Not because I am a snob, but because I like doing it. I like to make him things, make him taste new stuff, textures and flavors. He inherited my appetite for food. You should see his eyes lit up whenever the word ‘food’ is mentioned. He eats with so much taste and joy, it just fills my heart (and that of everybody else witnessing it).
So the kid loves food. Good. Different doctors have pointed out that, although there is no medical proof (yet), certain foods might improve and/or prolong Jacksons vision. I tried to read up about it but it seems like a jungle out there. Vitamin A, omega 3, DHA, vitamin E, supplements, contradicting research results…
Here’s what I have learned: he should eat vegetables as much as possible. Carrots, sweet potatoes, spinach, kale and pumpkin provide vitamin A. Vitamin A is the most researched dietary recommendation, long-term studies have shown promise as a treatment for retinitis pigmentosa patients. The studies however did not include specific Usher syndrome patients, so it’s not really sure if they benefit from vitamin A as well. DHA (an omega-3 fatty acid) is most common in fish (salmon, sardines, shrimp) but can also be found in flaxseeds, walnuts, Brussels sprouts, cauliflower, broccoli and soybeans. DHA seems to enhance the effects of vitamin A as a treatment for retinitis pigmentosa.
These nutrients have been an important part of my diet for years, and I have naturally integrated them in my sons’ diet before knowing all of the above. Lucky me. I know a lot of parents who struggle to feed their kid(s) vegetables and/or fish. Jackson eats veggies at least twice a day, he loves salmon, prefers edamame beans over M&M’s (not sure how long that will last…). Of course he also eats pancakes, cookies and chocolate. He is a kid, he should. But at home the pancakes are made with oats, banana and apple. I try various recipes for cookies and muffins, so at least I control what’s in them. You can smuggle vegetables in almost everything. His favorite burgers are made with broccoli, cauliflower and chickpeas. You can make perfect chocolate brownies with sweet potatoes and muffins with carrots or zucchini.
Knowing what I know now, and encouraged by the doctors, the importance of a healthy and balanced diet is even more important to me and my family. It seems like such a small effort to make, one that possibly may have a huge impact on my sons future. And if not, all I did was feed him well.
I am not a nutritionist, so I am also reaching out to you here. What’s your experience? What did your doctor tell you? What did you find online or read about having Usher and your diet? Do you give your child any supplements? I am interested to hear more on this subject.
As a molecular biologist and genetic scientist (and lawyer and nurse in a previous life – I have done a few degrees lol). I have an interest in gene therapy so can’t help with the food side of things. I can tell you that scientists have recently restored hearing and balance in a mouse model of Usher syndrome type 1G. These findings open up new possibilities for the development of gene therapy treatments which is exciting.
Nicola – I support someone with Ushers and I busy trying to get up to speed. Can I ask if the mice study added anything to the diet tips already given.
Hi Nicole. I wish I could tell you. I only know what the doctors tell me and what several Usher patient organisations advise. You can check this link for example: https://www.usher-syndrome.org/our-story/blog/diet-and-usher-syndrome.html.