Help people with PKU in Armenia

Help PKU people in Armenia

Worldwide, PKU has an estimated prevalence of 1 in 23,930 live births and affects about 450,000 individuals. 120 of them live in Armenia, a small country between Turkey and Iran. This genetic disease has little research, but one thing is clear: from birth to the end of their life, a person with PKU needs to maintain a low-protein diet. To do this, it is most important to eat 3-5 packets of medical formula a day, around $10 each. The average salary in Armenia is $400 a month, 30-40% of the population lives below the poverty line. Currently, there are 120 PKU-ers registered in the country, the state provides only one type of formula and only up to 18 years of age. After the age of 18, patients with PKU have to buy the formula themselves, but most of them do not even know where and how (and most importantly, with what money) they can access formula. In most states of the US, PKUers are provided with formula through insurance or the government.

Starting this March, I have been collecting extra formula from all over the PKU community in California, buying low protein foods that aren’t available in Armenia, and shipping them off to Armenia. Each package is about 20-30 lbs. They are received by the only genetic doctor who works with PKU in Armenia. She distributes the package between families in need, starting with those who are over 18 and do not receive help from the government anymore. For example, there is a girl who was diagnosed at 6; at that age she wasn’t diagnosed, did not follow a diet- so she did not talk, did not recognize her mother, did not have any social skills and would not be able to attend school. 2 years into her diet, she started talking. Going forward, her life was almost normal. She went to school, learned, and planned for the future. She turned 18, and now she is not provided formula. She and her family know how scary it is, not from Google or pictures, but from their own experience. She awaits these packages, because every single packet of formula she gets is vital. The shipping alone of these packages costs $50-150, sometimes the packages are stopped by customs clearance and we are forced to pay $100-200 dollars customs fee.

Right now, I don’t have a good business plan on how to provide for every single PKU-er in need in Armenia, fully and regularly, right now I am doing what I can and this is actual help. But, I need financial help for shipping. I calculated that until the end of this year, I will need $3,600 for shipping alone. And another $1400 I can spend on low-protein food from American supermarkets to complete the packages with something tasty, like vanilla puddings or vegetable chips, which are not available in Armenia. Moving forward, I have global plans about PKU awareness in Armenia, lobbying the interest of PKU with the department of health in Armenia and much more. But, at this moment, I will just start with the packages. So, can I ask you for a couple of dollars to cover the $5,000 budget before the end of this year?

Thank you for supporting the PKU-ers in need of Armenia. Happy PKU Awareness Month-May!

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PKU is a rare genetic disease from which a person can only have 2-5 grams of protein a day while a usual person without the disease eats 50-100 grams of protein a day. A protein intake of more than 2-5 grams will cause irreversible brain damage to a PKU-er. These people don’t talk, can’t live independently, and don't develop by their age level. Some lose the ability to walk and develop many neurological diseases, some leading to seizures. Their IQ may be under 70. The scariest thing is that without a managed low protein diet, the brain continues to destroy at any age, and the diet needs to be maintained for the person’s entire life.

Upd 05/24

Because of your help, today I can send 150 individual packs of PKU gel to Armenia!!!!