Raising a child with a rare disease or condition is not an easy task. Many parents and families are not prepared for the added stress and hardships that come with having a chronically ill child, and it can be difficult to find enough support and information on managing this type of medical situation.
Parents often feel isolated when their children have such serious conditions, but there is hope. Families can draw together even more by joining local or online forums or support groups where they can share stories, get advice from other parents who understand their struggles and provide moral support for each other.
Here are nine things that parents of chronically ill or rare disease children can do to help improve their quality of life.
1. Educate Yourself
Having a sick child will undoubtedly take an emotional toll on the parents, but it is important to keep up with your own health to provide enough support for your child.
If you are familiar with the ins and outs of how to treat your child’s condition, including any medications or hospital visits they might need, this can make dealing with medical professionals much easier.
2. Find Medical Experts Who Understand Your Child’s Condition
Doctors are not always well-versed when it comes to treating rare conditions or diseases. Parents should research doctors who focus specifically on their child’s illness and talk about their case history before making an appointment to see if they are truly prepared for all the unique challenges of this type of child.
3. Educate Family, Friends and Other People in Your Child’s Life
It can be helpful to make a list of all the medications and treatments your child needs and create an instruction manual on how to handle your child’s condition.
This will help relieve some stress for you, especially during emergency situations or when you are not around. You might also consider programming the phone with information that others could use if they need it while you are unavailable.
4. Take Care of Yourself
Parents should try to eat healthy meals, get exercise and get enough sleep every day, so they have the energy required to take care of their children throughout each day.
It is important to seek out new hobbies or interests outside of parenting, so you have a chance to take a break from the stress and recharge your batteries.
5. Find Ways to Keep Your Child Entertained and Happy
Children with rare diseases or conditions may need special attention, but that doesn’t mean they can’t have fun! Parents should think of ways their children can enjoy themselves, even when they aren’t feeling well.
This could include going to a movie, reading a favorite book a dozen times in a row, playing games online, or having a family game night. Having this positive time together as a family helps develop your child’s self-esteem and will make them feel like any other kid.
6. Arrange for Additional Help at Home
Parent only has two hands and eight hours in the day, and some children require more support than others.
Parents should think about hiring a babysitter for older kids who can help with simple tasks like carrying groceries or keeping track of medications while parents take care of younger children. Parents might also bring on a housekeeping service to tidy up their home and do laundry periodically, so they don’t become overwhelmed.
8. Participate in Clinical Trials
There is often a lot of misinformation about clinical trials, and the medical community doesn’t always understand how to go about finding patient participants for new experiments.
But patient recruitment can be key when trying to find treatments and even cures for rare diseases. A patient recruitment agency can help connect families who are looking for ways they might be able to help their children with these types of clinical trials and research projects.
9. Join Support Groups
Many rare disease organizations have online forums or chat rooms where parents can discuss their child’s condition and get support from others who are walking in the same shoes.
These groups also provide opportunities for fundraising, lobbying, and education to help raise awareness of these conditions and work towards finding a cure.
Raising a child with a rare disease or condition can be difficult, but there is hope. Families can find strength in each other by joining together and forming support groups. By educating friends and family, taking care of your own mental and physical health, and finding ways to keep your child entertained and happy, you may find some unexpected strength in yourself.
