How long have you been dealing with children who have chronic illnesses?
28 years now
How does it affect you personally?
No one wants to see someone they love so sick. You wish you could go through it for them, but you can’t. It hurts to see them struggle every day to try and have a normal life.
What advice can you give to other parents with children who have chronic illnesses?
You need to stay strong and focused. Do a lot of research and always let them know you will always be there for them.
What is your opinion on health care for these diseases? (Canada)
Clearly there isn’t enough. The public needs to be educated so they are not so judgmental towards those who are sick.
What’s your opinion on the specialists and their lack of knowledge in these illnesses?
My daughters Crohn’s disease specialists (G.I. doctors) are very good. They do anything and everything to help them both. They listen to the girls, which is very supportive of them.
Postural Orthostatic Tachycardia Syndrome (POTS) specialists are not as advanced as they should be. More research needs to be done. The public also needs to be more educated so they are aware of the severity of this disabling disease. As well, more support groups for victims and their families are very much needed.
Any advice to the ones facing chronic illnesses?
If you are faced with a chronic illness, you need to never be afraid of asking for help. We all need help. You also need to do as the doctor tells you, but if you are not happy with how they are treating you, get another opinion. You must never give up. Push yourself, but don’t hurt yourself. Listen to what your body is telling you. Use any and all resources available to you, and keep your sense of humor. Even get angry! Do what you have to do.