There are many new diagnosed families who have never even heard these two letters “CF”. So I can understand that it’s going to be scary and full of the unknown. Sometimes I really wish when people are given the CF diagnosis it would come with not here our your sons’/daughter’s gene mutations and hang up the phone. I have honestly heard that this is how some people are informed of the diagnosis and this is AWFUL. I want there to be a better way of sharing this diagnosis to new families because that is not the correct way at all to reveal this disease. There needs to be the “correct” people to reveal this diagnosis. I believe the correct way to do this is through a pulmonary specialist and also a counselor of some sort. These individuals can share the knowledge they have through their profession to give some guidance on what to expect next and to reassure them that their son/daughter will be fine.
But until these things start happening I will be trying to put a positive spin on this disease as much as I can. So I come to forums to help these newly diagnosed families. Eventually, I will be branching this out even further of ways to help newly diagnosed families. I am not sure of how I will be doing this but I have a few ideas. The first one is I want to hold a “CF education day” at my clinic and have CFers come and share their journeys with anyone who wants to listen. This hopefully will paint a picture to some newly diagnosed families. But until then I will try to help as much as I can on forums and social media.
So here is one of my latest replies to a newly diagnosed CF family.
My husband and I just found out our little girl of 6 weeks has CF. We are trying to deal with it. I feel so angry and so heart broken for her. People keep sayin "don’t worry she will grow out of it" or "just drink aloe juice, it cured my friends CF". How do you guys deal with ppls ignorance?? I know they mean well… but it takes all my strength not to scream at them.
CONGRATULATIONS on that little baby girl!! I think the feelings that you are dealing with are very normal when it comes to newly diagnosed CF parents. I assume you have never heard the two letters “CF”? Most parents of newly diagnosed children have never ever heard those two letters. This can be scary but the world of CF that we live in doesn’t have to be that way at all.
Let me ask you did you Google CF like any other person would? I assume you found a bunch of negative information about how awful this disease is and how devastating it can be. The key here is yes it can be this and it can be that but it really doesn’t have to be all that bad and negative.
The world is full of ignorant people and not just to CF so always keep that in the back of your mind. Most people have never even heard of CF and they make assumptions of what is. I was once told oh is CF that disease that impacts your muscles and nerves? Uhm no that is a totally different disease. So what did I do I started to educate this person on CF. This really allowed me to share my disease and the person that it has made me become.
But when these people come along who are being ignorant it is your opportunity to educate them about CF. WE need to take advantage of these opportunities to spread awareness and put the correct information out there to the public. Try to put a POSITIVE spin on this disease. Tell them how amazing your daughter truly is and how this disease has shaped you and her for the better. The more people who know about CF and have a general idea of what CF is, the better our world will be for everyone with this disease.
I also want you to understand that putting your daughter’s health first is the main priority right now. You are setting the FOUNDATION for your daughter at an early age with this disease. Try to be as compliant as possible when it comes to airway clearance, taking all the medicines, and attending doctor appointments. This will pay dividends for her health in the years to come. She will thank you not right away but when she is older and can understand how much of a POSITIVE influence you have been in her life.
But you have to also remember she is a “normal” child. She will go to school, she will have a bunch of friends, she will be just as active as any other child who doesn’t have a disease. Your daughter will view CF as you view CF. If you paint CF as a dark and scary picture she will as well. You have to try and show her that CF is a part of her life and your life but paint a picture that things will be ok and she will follow this lead as well.
There are so many POSITVE stories out there momma about people who are living out their dreams with this disease. Those are the people you need to find in this community. The more POSITIVE people you surround yourself and your daughter with the better you will feel about this disease. You will find that the people who truly care about you and your daughter will show the greatest support for you.
I know many fibros and cysters who are living normal “healthy”lives with this disease. I for one feel I am in that boat. I have had many dreams come true. I have a loving wife, I have a little baby girl, I have graduated college, I have a career, the list goes on and on. So what I want you to do is see this disease as something that will shape your daughter into a STRONGER person. She will go on to achieve many things in life just like every one else. She has the potential to be GREAT just like every one else does every time they get out of bed in the morning! CF will never define who we are. WE define who we are!!