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Can people with Phenylketonuria work? What kind of work can they perform?

See how people with experience in Phenylketonuria give their opinion about whether people with Phenylketonuria can work and what kind of jobs are more appropriated for people with Phenylketonuria

Phenylketonuria jobs

Phenylketonuria (PKU) is a rare genetic disorder that affects the body's ability to break down an amino acid called phenylalanine. People with PKU have a deficiency in an enzyme called phenylalanine hydroxylase, which leads to the accumulation of phenylalanine in the blood and brain. If left untreated, this can cause intellectual disability and other neurological problems.



While PKU is a lifelong condition, it can be managed through a strict phenylalanine-restricted diet. This diet involves avoiding foods that are high in phenylalanine, such as meat, fish, eggs, dairy products, nuts, and certain grains. Instead, individuals with PKU consume specially formulated medical foods and low-protein alternatives to meet their nutritional needs.



With proper management and adherence to the diet, individuals with PKU can lead healthy and productive lives. However, there are certain considerations when it comes to work and career choices for people with PKU.



1. Office-based jobs: Many individuals with PKU pursue careers in office-based settings, where they can perform tasks that do not directly involve handling or preparing food. Examples of such jobs include administrative roles, customer service, data entry, accounting, human resources, and various roles in the IT sector. These jobs provide a controlled environment and allow individuals to focus on their work without being exposed to high levels of phenylalanine.



2. Creative professions: People with PKU often have unique perspectives and talents, making them well-suited for creative professions. They can explore careers in graphic design, web development, writing, photography, illustration, music production, and other artistic fields. These professions offer flexibility and the ability to work independently or in a controlled environment.



3. Research and academia: Individuals with PKU can contribute to scientific research and academia. They can pursue careers as researchers, laboratory technicians, or professors in fields such as biology, chemistry, psychology, or genetics. These roles often involve working in controlled laboratory settings, where exposure to phenylalanine can be minimized.



4. Entrepreneurship: Some individuals with PKU choose to start their own businesses or work as freelancers. This allows them to have greater control over their work environment and schedule. They can explore various opportunities such as consulting, e-commerce, content creation, online tutoring, or developing their own products or services.



5. Advocacy and support: People with PKU can also contribute to the PKU community by working in advocacy and support roles. They can become patient advocates, educators, or counselors, helping others with PKU navigate the challenges of living with the condition. These roles often involve raising awareness, providing guidance, and offering emotional support to individuals and families affected by PKU.



It is important to note that the suitability of a particular job may vary depending on the severity of an individual's PKU and their ability to adhere to the phenylalanine-restricted diet. Regular monitoring of blood phenylalanine levels and close collaboration with healthcare professionals are crucial to maintaining optimal health while pursuing a career.



In conclusion, individuals with PKU can certainly work and contribute to various fields. With proper management of their condition and adherence to a phenylalanine-restricted diet, they can pursue careers in office-based jobs, creative professions, research and academia, entrepreneurship, as well as advocacy and support roles. It is essential for individuals with PKU to find a work environment that minimizes their exposure to phenylalanine and allows them to thrive both personally and professionally.


Diseasemaps
5 answers
Yes. If the disease is properly controlled and maintained an effected person could live a normal life.

Posted Feb 24, 2017 by Levi Christopher Lucero, Jr. 2185
Of course they can work. Nothing can stop people with PKU from working.
If there is no brain damage or severe intellectual disability involved then people with PKU can work in any field.

Posted Sep 18, 2017 by Georgina 1300
PKU while annoying at times, can sometimes limit ones ability to work. I have found that even in drinking all my formula and being on diet I tend to be less able to handle physically demanding jobs. My energy comes from the formula and I have to take extra vitamins to supply energy. Also when I am working there is a fog and forgetfulness is a real problem. I have not been able to hold a job due to forgetfulness even on the diet. It varies case by case though. PKU people are just as intelligent as the next person and it may not make each person weak as it does me.

Posted Sep 22, 2017 by Nickelle 2000
With uncontrolled pku and high Phe levels a job would be hard to manage because of the anxiety and pressures of a job. The personality disorders that seem to present themselves with high levels would make a job very very difficult.
With managed phe levels and a low protein diet a job should be easy. Of course this is along with a strict diet and formula.

Posted Jan 28, 2020 by Ryan 600

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Stories of Phenylketonuria

PHENYLKETONURIA STORIES
Phenylketonuria stories
Hello to everyone that reads! im currently 19 with a PKU toddler! he was born march 7th 2014. got a call on the 12th and then took a nice long ride a ccouple hundred miles away on the 14th to my son's pku clinic. they explained everything to me and h...
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I was a month old went the doctors  told my parents that I have pku. I'm 42 years old. I got married in 2005. To a really nice guy but in 2009 my husband passed away on February 13, 2009. At that time I went off diet for 5 years.  And it really mes...
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Found out my baby daughter has got PKU, still getting my head around it all
Phenylketonuria stories
Hi! I'm Andreia. I'm 28 years old. I'm from Portugal living in irland Since 2014. I was diagnosed when I was 12 days old. Still following my diet. My family did everything they could to give me all I needed. I'm a nurse now, have a job, starting my o...
Phenylketonuria stories
It's actually my children that have PKU. Both diagnosed within ten days of birth and doing very well. My daughter is now nearly ten and currently on 7.5 exc. per day. My son is 5 and on 7 exc. per day.  Both are treated at Bristol Childrens Hospit...

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