Managing PKU in Ukraine

We are happy to share this blog coming from Anna from Ukraine whose son Erik has PKU. We are grateful to Anna for sharing her story with the low protein community.

1. How was your child or you diagnosed? How many days after birth the diagnosis was confirmed? What were the first steps after diagnosis?

My son Erik was born in 2017 in Ukraine, a blood test was taken at the maternity hospital, and a month later a geneticist reported a problem, then we repeated the test and classic PKU was confirmed. It was a difficult period in life, but I think we managed to accept the diagnosis.

2. What was the most difficult thing for you at the start of the low protein diet? What were the challenges?

We would like more support from doctors, but we were told about the basic rules. We were also given contacts of other parents of children with PKU, and they showed us how to take a test, and in the community of parents we learned how to count proteins and much more.

3. Please provide an outline of the low protein diet management in your country. How do you manage your child’s diet? What low protein products are you using? What are the favourite low protein foods?

In Ukraine, it is customary to weigh all foods and count the protein that a child consumes. We have several local producers of low protein products, and also many products are ordered from Poland.
There is a frequent problem with the provision of medicinal mixtures, procurement and delivery, sometimes there are delays in small towns and villages this problem is more noticeable.

4. What challenges (if any) do you face on a daily basis?

Since our child does not have a high protein tolerance, the choice of foods and dishes is very limited. We need to look for a balance between a small amount of protein and so that the child wasn’t hungry.

5. Please describe briefly the way the provision of low protein foods and protein supplements is managed in your country. How do you source these products?

Ukraine provides children and adults with medicinal formula, but the choice is not as large as in other countries, and there are often delays in supplies, which causes enormous stress for parents. Parents buy food themselves.

6. Any advice or message to the rest of the low protein community worldwide.

PKU is a rather complex disease and I think that children, parents and adults with PKU are great, since it all requires more work. I hope that in the future it will be easier for people with PKU to maintain a diet and medications will help expand the diet. I also think it is important to support manufacturers of low protein products, educate society about this disease and in every possible way support families with children and adults with this disease.

More

Living with phenylketonuria (PKU) presents unique challenges and adaptations across the globe. PKU is a rare genetic disorder that requires individuals to maintain a strict low-phenylalanine diet to prevent severe cognitive impairment and other health complications. As the understanding of PKU evolves, so does the approach to managing the condition in various countries.

In the United States, a systematic screening approach ensures early diagnosis, which is crucial for effective management of PKU. Here, families have access to specialized dietary resources, including low-protein foods and medical foods enriched with amino acids, enabling better compliance with dietary restrictions. Support networks and advocacy groups also play a significant role in providing assistance and resources.

In contrast, countries with fewer healthcare resources may face significant challenges. In some regions, limited access to specialized foods can make maintaining a low-phenylalanine diet difficult. Families may need to rely on traditional foods, resulting in variations in diet management. Education around PKU is also crucial; in some places, greater awareness can lead to improved support systems and access to treatments.

In Europe, many countries have established comprehensive healthcare programs to manage PKU. The availability of specialized clinics and dietitians helps families navigate the complexities of the disease. Some nations also provide financial assistance to offset the cost of low-protein products, making it easier for families to acquire necessary foods.

Across Asia, the experience of living with PKU can differ significantly based on local food cultures, healthcare access, and societal awareness. While some countries are beginning to adopt more structured approaches to PKU management, others still struggle with education and resource limitations.

Overall, the global landscape for PKU management reflects a tapestry of different practices and challenges shaped by resources, culture, and awareness, emphasizing the importance of tailored approaches to support individuals living with PKU. For those seeking more detailed information, resources can be found at ProMin’s PKU blog.