• #171205442285

    rose,

    I’m so glad to hear you say that about your son! Also, I can completely understand why you wouldn’t want medical things posted on FB. I hate FB and wish it would disappear actually…nothing good ever seems to come from it. I never really thought about posting my CF on FB but I can see your concern now as a parent. I hope the best for your son now and in the future!

    Profile photo of my2girlsmy2girls
    Member
    #171205436983

    As far as putting medical info on FB, she really should have asked if it was okay to share on her page. As others have said, it boils down to privacy…I personally don’t put too much info on my own page. I do use FB as a means of updating my condition whenever I am in the hospital. Those who know me, know I have CF, but in the end it is my choice to share as much or as little about my CF on public forums. Hopefully your extended family will ultimately understand. When your son is old enough, he will call the shots as to how much and when he wants to share about his CF.

    Jenn 41 wCF

    Profile photo of megankmegank
    Member
    #171205436974

    In 1959 I was told there’s “a cure just around the corner”. Well I have been waiting 54 years for that cure. I am darn glad I did not hold my breath waiting. I learned many years ago not to look through “rose colored glasses” it is what it is……….Scorp

    #171205436963

    Because of her we received one donation for our CF team of $2000 she really made it hit home to the people who know Jaden.

    #171205436962

    My grandson has CF and its on FaceBook and anywhere else we can think of because we are very active in awareness. We have a team: Jaden’s Juggernauts who walk yearly to help raise money for research. We get a lot of donations due to the fact that friends and family know Jaden and want to help find a cure in his lifetime. Personally knowing someone really helps people open the wallets and in order to find a cure there must be funding. Im sorry we never thought of letting Jaden get older an deciding for himself because of our relentless pursuit of awareness and a cure.

    Profile photo of megankmegank
    Member
    #171205436958

    Thanks to the CFF our disease is still treated like we are leper’s. You ask anyone what “Diabetes” is and they can nail it. Cancer, everyone knows what it is. Mention CF and very few people have a clue. Yet today, Drs. offices (outside of CF clinics) is very sketchy. I have asked a nurse in a prospective PCP office if she knew what CF was. Of course her reply was “OH yes” , then she proceded to ask me when I think I contracted CF. I told her the office just failed the test, and I left. My most recent encounters have been as follows. My last PCP for 4 years concentrated on liver disease, could not get them past it. My currant PCP is concentrating on an ulcer I may or may not have had 35 years ago, and has not given me any problems in as many years. I do not stand a chance of good medical treatment, it is sad. Thank heavens I have Dr’d myself all these years. Sarah the little 10 y.o. girl that needed a pair of lungs, has done more to get the name of CF out in the spot light as anyone has. FOR NOW we have to be careful about who finds out about our CF. For some reason it is kept a big secret by the CFF from most of the U.S. The only time you hear about CF is inside the CF circle.

    Profile photo of CrunchCrunch
    Member
    #171205436957

    Ppl do have a Facebook page without sharing every single thing. Ppl need to take notice of what ppl share. If it deals with another person, one should ask before posting anything. I would be upset if someone posted something personal about me. Telling ppl about my cf is my choice. I am not hiding my cf but its up to me to tell others.

    Profile photo of BOURBONBOURBON
    Member
    #171205436947

    There is definitely a balance to be struck. When our daughter was diagnosed we told the village because it was such a big deal, we were very upset and could never have hid it. We also put an announcement on FB and this has been great as we have upped awareness and lots of people have then done fundraising for CF! I only really mention her CF though when she has an annual review, I don’t post about her CF day to day. It’s a good balance: people know she has CF but it’s just PART of the picture. It’s nothing to hide but it’s not what defines her or us. This approach really works for us!

    Profile photo of mom2boysmom2boys
    Member
    #171205436940

    The whole point of Facebook is to share our lives with the world, correct? If you don’t want people posting anything on their FB pages from your FB page, then don’t have a FB page at all. Honestly, I wish more people would censor what they put on FB. But I have to ask…what’s the difference between Facebook and this PUBLIC CF forum? Nothing that I know of, all it takes is an email address and BOOM, you’re on a social media website, much like this one… Even though this website is designed for a special cause it is still a SOCIAL MEDIA website and as Melissa75 stated…nothing is truly deletable.

    Are you seriously asking what the difference is between this forum and Facebook?

    Wow.

    Profile photo of davlyodavlyo
    Member
    #171205436937

    Yeah, CF is private health information as far as I’m concerned. Would you want your medical records posted online for everyone to see? It’s right to not be ashamed of it, but wrong to post it on a public forum. There’s a reason we all have aliases on here. I wouldn’t want my employer to be able to google me and come up with my private health info, no matter how open-minded they are. I want to be in control of that information.

    Profile photo of littlehelenlittlehelen
    Member
    #171205436935

    My husband and I are the types of people that really value our privacy. We want to be the ones in control of where our information is posted, no matter what. I am due with our first child in September. We are literally banning ALL family and friends from posting ANY pictures of our child on Facebook or any other social media site. There are just too many crazy people out there on the internet. I cannot control who sees pictures of my child when I am not the one posting it. Too many people don’t have their profiles locked down and information is too easy to come by on social media. Even if I am the one who posts a photo, what if a friend shares it and then it gets shared again and again by people I don’t know. It still comes back to me and then there is the issue of potentially thousands of people I don’t know seeing pictures of my child and knowing my name.

    CF or not, it’s just not worth it to me. I’ll remain anonymous, thanks.

    Profile photo of goldie1goldie1
    Member
    #171205436829

    There are way too many over sharers on Facebook! I think you were right in getting upset. My boyfriend took a bunch of pictures of my brothers young kids recently and he ASKED if he could post them on Facebook before even considering posting them. And that’s what people should do, respect other people and their privacy especially when it has to do with their kids. Personally, I think it was rude for her to take the photo off your page in the first place, whether it had a medical note on it or not. You don’t know her 500 friends! So many people have just acquaintances on their pages and dont actually know the people, some could be creeps, who knows. Anyways, if you wanted to put his medical info on Facebook you could, but other people shouldn’t feel like they are entitled to, unless you are doing a fundraiser or trying to spread awareness or she has your permission. And not because you are ashamed but because you are SMART and CAUTIOUS.

    It’s a tough call with how parents advertise their kids CF. my parents were the type who kept it private because they wanted me to feel normal and not have people treat me differently, not because they were ashamed. And unlike what Aggie has said, keeping it hidden did not make me feel ashamed and did not make me antisocial, it made me feel normal. All of my siblings have been successful even though we “hid” our CF growing up. BUT because they kept it private it has been harder for me as an adult to tell people about it. You just don’t want people to feel bad for you or treat you differently.

    I think the way you are being cautiously open about it is the best way! You guys are doing good.

    Also, this is a PUBLIC CF forum but I’m pretty sure no one on this forum knows my real name, so it’s still anonymous. You would have to do some real digging to figure out who I am.That said, this forum is totally different than Facebook.

    Profile photo of ethansmommaethansmomma
    Member
    #171205436825

    Thanks, Pat. We want to do everything right. I know we will make mistakes, but we’re trying.

    Profile photo of AlexRockwellAlexRockwell
    Member
    #171205436822

    I think your child has the right to absolute privacy in this matter. I couldn’t tell anyone for years that I had CF because the job I did demanded a physical. I would have been physically disqualified if the whole world knew of my condition. You are absolutely right in this. Whoever posted that on FB should have asked your permission first. That is incredibly thoughtless for them to do that.

    Profile photo of ethansmommaethansmomma
    Member
    #171205436833

    Wow! My family will be like Sarah. My son is in preschool and takes his enzymes. He knows to respond openly if kids ask him. So, no, it is not a secret. I want everyone in the world to know how much he struggles…but not on Facebook. And Aggie, there is a huge difference in being on this page where people are anonymous and people can come for support. She took a picture from my Facebook page and tacked on some medical information. Fine to take the picture, which was already there, but not the medical information. We pray for my son, but with close personal friends, and believe me God hears that without it being announced on a social media webpages. It’s funny, just last year when I wanted to send a letter home in preschool explaining what CF was, I was criticized by CF adults who asked me why I would do that to my child? That is what made me reevaluate how I would approach it. Openness, not hiding anything, and pride in our struggles – perfect…but announcing on Facebook and other public forums – something we just wouldn’t do. My little boy knows how proud I am, and he knows I am so proud of him for fighting CF….don’t worry, Aggie, there is no shame involved here and he is being raised to be proud of everything he is and has to go through.

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