Because tyrosinemia is such a rare condition, most people don't know a lot about it. Even people with tyrosinemia and the people who are close to them may have beliefs about it that just aren't true. Here are some common myths about tyrosinemia and its treatment.
Be sure to talk to your doctor before beginning any diet or fitness program, and to learn more about this condition.
Tyrosinemia is a somewhat common condition.
Tyrosinemia is extremely rare. Only 1 in every 100,000 babies is born with it.
It is possible that my child will eventually grow out of tyrosinemia.
Tyrosinemia is a genetic disorder that is inherited from both parents. Those who have it will have it for their entire life. It makes their body unable to break down an amino acid called tyrosine, which is one of the building blocks of protein.
My child can never eat any type of protein.
While a low-protein diet is required to prevent too much tyrosine from building up in your child's body, they still need small amounts of protein and amino acids to develop normally. They can eat measured amounts of low-protein foods, such as cereals, potatoes, sweet corn, and rice. These are sometimes referred to as protein exchanges. Also, your child can get necessary nutrition from protein substitutes, or protein supplements. They contain the ingredients you need from protein (called amino acids) but leave out tyrosine and phenylalanine.
Having tyrosinemia means my child will not be able to drink formula, and eventually will have trouble eating bread, pasta, cereal, and cake.
There are low-protein versions of many foods, including baby formula, that you can order from specialty companies and have delivered directly to your home.
I can give my child an occasional break from his diet as long as the dietitian doesn't find out about it.
Even if nobody else finds out, you can't fool your child's body. Not sticking to the diet increases the risk of your child becoming seriously ill.
If my child takes Orfadin® (nitisinone), he/she doesn't have to stick to their low-protein diet.
Your child must maintain a low-protein diet while taking Orfadin®. The reason is Orfadin® blocks the breakdown of tyrosine before it can be changed into harmful substances. But the tyrosine remains in the body. Sticking to a low-protein diet helps to minimize the buildup of tyrosine and phenylalanine in the blood.
If my child misses taking a dose of Orfadin®, I can give a double dose to make up for it.
No. If a dose is missed, do not give a double dose of Orfadin®. Instead, tell his/her doctor or clinical nurse specialist about it. Your child might need to have an extra blood test to see if there is any change in blood tyrosine level.
If my child has no symptoms and doesn't feel sick, he/she can stop taking the medicine.
Often, people with tyrosinemia are asymptomatic, or they do not feel sick or see signs of illness. Regardless of how they feel, they need to be sure to stay on treatment and keep to their diet. While they may not feel sick, sticking to their diet and treatment regimen is important and will keep them as healthy as they can be. If they neglect their treatment or diet, toxic substances can build up over time in the blood, causing, among other things, liver failure, kidney dysfunction, and neurological crisis.
My child's daily dose of Orfadin® will stay the same throughout their life.
The dose of Orfadin® that your child needs to take may be adjusted occasionally as they get older or if their weight changes. That is one of the reasons they need to have blood tests to measure the level of tyrosine in their blood.
* Do not adjust your Orfadin dosage. Contact your doctor if you have questions about your treatment plan.
Orfadin is a synthetic reversible inhibitor of 4-hydroxyphenylpyruvate dioxygenase indicated for use as an adjunct to dietary restriction of tyrosine and phenylalanine in the treatment of hereditary tyrosinemia type 1 (HT-1).