Help! My Child Has a Fatty Acid Oxidation Disorder
Every parent wants their child to be happy and healthy, but unfortunately not every baby will be born with picture perfect health. If you just found out that your child has a fatty acid oxidation disorder, or FAOD, you are probably feeling scared and overwhelmed. What does this mean for your child’s future? How will this affect their life? At the International Network for Fatty Acid Oxidation Research and Management (INFORM), we understand that this is an emotional time, but we want to be there to help.
How to Cope When Your Child Has an FAOD
As parents of a child with a fatty acid oxidation disorder, you and your partner have a few more considerations that you now have to take into account. At INFORM Network, we are sharing some ways to help you cope after this shocking diagnosis.
- It may not be the end of the world. With a modified diet, strict eating schedule, and regular monitoring, some people are able to live relatively normal lives with a fatty acid oxidation disorder. Early diagnosis especially allows for the proper medical treatment to try and prevent more serious health problems from occurring later on.
- Do your research. It is natural to be afraid of something that you know nothing about. Help ease theses feelings by doing as much research as you can on your child’s specific FAOD disorder. There is a big difference between ACAD9 deficiency and VLCAD deficiency. Knowing the specifics of your child’s disorder will help you feel more prepared for the future because you have a better idea of what to expect.
- You need to accept these changes. Because your child has a fatty acid oxidation disorder, your life is going to be different from parents with children who do not have this disorder. You will have to take more precautions. The sooner you accept these changes, the easier it will be to start looking toward the future.
- You are not alone. The important thing to remember is that while FAODs are rare, you are not alone. There are plenty of other parents out there who are going through the same thing as you, and they are getting through it. If you are struggling with your child’s diagnosis, talk to a professional about it or look for an FAOD support group.
- Have hope. There is always new research on fatty acid oxidation disorders. While you might be feeling a little hopeless or lost, there are always new developments involving treatments. There may not be cure now, but some day in the future there could be a treatment that could help your child live a more normal life. If you want to be up-to-date on the latest advancements in fatty acid oxidation disorders, consider attending our FAOD conference.
While watching your child struggle with a fatty acid oxidation disorder can be scary, you can get through this. At INFORM Network, we want to be your source of trusted information on FAODs as well as your support system during this difficult time.