This year has brought an especially nasty and dangerous strain of the flu. Nobody wants the flu, but contracting the virus while suffering from an underlying condition can be more dangerous than many people realize
In an interview with Francesca Abbott, we discuss her son, Elijah, who is living with a urea cycle disorder. Elijah’s body is unable to process nitrogen, which can lead to a dangerous buildup of ammonia in his body that can be fatal without a fast treatment response. Below we speak about what it takes for Francesca’s son Elijah to make it through flu season while living with a UCD. You can learn more about urea cycle disorders here.
- I have been reading up on UCD, but would you mind giving a brief description of your son Elijah’s condition for our readers?
FRANCESCA: Having a UCD means that there is an enzyme that is missing in the body, which means that it cannot properly break down nitrogen. This turns into ammonia, which can become toxic for Elijah and can lead to a coma or death. We have to give him a low protein diet, and he takes medication and calorie supplements three times a day. It is a genetic disorder so he was born with the condition. If his ammonia begins to rise, irritability, vomiting, and tiredness are usually the first warning signs.
2. What is the first memory you have of the condition?
FRANCESCA: Well, Elijah was just 3 days old when his newborn screen showed signs of him having a urea cycle disorder. My phone had been turned off so the hospital sent a police officer my house to tell me to call them, which was a little frightening. He had really seemed perfectly healthy at first, but we had to take him to the hospital when he was 8 months old after his ammonia levels started to rise. He was diagnosed after that with a DNA test.
3. If you met someone who was recently diagnosed with a UCD, what would you say is the first thing you would tell them?
FRANCESCA: It really just helps to try to stay calm and take it one day at a time. It is manageable, but it definitely is not the kind of life that you would want for your child. He is going to have to face it for the rest of his life and it requires a strict diet and medication. It does require close attention to make sure that Elijah is eating and sleeping normally, but I also want to balance that with making sure that he can enjoy being a kid.
4. Thanks Francesca. Now flu season can be a challenging time for a lot of people, but it can be way worse for people with a rare disease like a UCD. I also understand that you have other children that are not affected by a UCD. Compared to an unaffected person, what are some specific challenges that you and Elijah face during the season?
FRANCESCA: Well like I mentioned earlier, monitoring his eating habits is important, because he will usually stop eating if he isn’t feeling well. It can require monitoring calorie and protein intake while ensuring he gets the nutrition that he needs. Even something like a cold or the flu could end up meaning a hospital stay.
5. What are some specific tips that you think would be good for UCD patients to know in order to stay healthy in the flu season?
FRANCESCA: Well washing hands and avoiding germs are important steps to take for everyone of course, but we usually just try to avoid public places like malls or stores where he could get exposed to something. We also try to talk with others about UCD so that they understand why we are taking precautions.
6. Now are these steps that you have described things that you have been instructed to do by a medical professional, or have you had to learn what works best for you by personal experience?
FRANCESCA: It really does require some personal experience before you know what works best. Two of Elijah’s siblings got sick and a test revealed that it was the flu. Although he was not sick, I gave Elijah some flu medicine just in case, to preempt any infection. Doctors said that it was safe for him to use. It seemed to work because he hasn’t gotten sick this year thankfully. But usually I try to boost his calorie intake while cutting out protein if he starts to seem sick.
7. Your conversation with us will definitely help raise awareness about precautions that rare disease patients should take to stay healthy during the season. The flu season can be a very challenging and intimidating time for people with rare diseases, especially when there are few other people who are dealing with the same issue. Do you have any suggestions to help rare disease patients feel less alone when facing these challenges?
FRANCESCA: Well you definitely are not alone, and we were able to find some support with the online UCD community. We have really found support from UCDinCommon.com. It helps to see what others are doing since many preventative measures are the same and we are all dealing with the same problem.
8. Thanks again for talking with me today Francesca. We are glad to have the voices of rare patients like you elevated in our stories. Are there any other last minute thoughts that you would like to share?