Supporting Adults with CF to Raise Healthy Families - Shared screen with speaker view
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Hi everyone! Welcome to Supporting Adults with CF to Raise Healthy Families! If you haven't already done so, please make sure to view and download the course materials: https://www.nacfconference.org/webinar-materials
We initially had a mother with CF who was part of our important speaker panel who has since not been able to join us. We will certainly miss this experience being included today as it essential.
So excited to see everyone here today! If you have questions, please place them in the chat and we will address as many as possible in the discussion period after our small group breakout rooms/experiential practice.
Thank you for sharing your story Chris. What a beautiful family.
I love the point you made about "its not about genetics, its about parenting"- I think so many clinicans tend to only look at it from the "CF" perspective, and not from a wholistic perspective
Thank you, Chris. "It is like going to the moon". I will never forget that sentiment. thank you.
Here is a chapter written by women with cf about family building for use in clinic with questions to ask: https://cfreshc.org/SRH-Guide/family-building/https://cfreshc.org/SRH-Guide/family-building/
That link didn't work for me Sandy! Said "page not found"
Thank you, Sandy. Excellent resource. Attendees should have access to the original course binder, which includes this resource, and much more!
Please look for the Appendix of the course binder for all resources that are included for each talk.
Traci, do we know yet if it is only the expulsion of the cervical mucus plug/thinning of cervical mucus or perhaps also other factors?
And our small group experience today will help us all have these conversations better, and not only give a handout.
Traci, thank you for sharing your perspective as a Pediatrician- As Chris discussed, his thoughts around this began before he was in the adult clinic- these conversations need to start sooner !
They must start sooner. Waiting until adulthood is a huge disservice to teens.
I totally agree with starting sooner rather than later. It can really effect mental health learning this at a later age
Shared decision making is so important. Good point Traci.
We will have a chance to practice asking the "one question" in our experiential learning segment later today!
People are afraid of being discriminated against during the process of family building Luckily the ADA covers domestic adoption (with limitations) but international adoption is not protected against medical discrimination.
CF care teams have an important role in adoption. Many states require medical documentation from physicians that prospective parents are likely to "reach the age of majority" of children.
During the certification process before placement, and during finalization in court.
There are several talks at the upcoming NACFC on parenthood and CF. Including a really powerful display highlighting the experience of parents with CF using a PhotoVoice methodology!
My teenager was watching TikTok in his room two weeks ago and came out and asked “Are you going to die?” I asked, “what are you asking?” And he told me he was watching a TikTok video by doc about cf.
So I explained to him about HEMT, and increased life expectancy. It was surprising and out of nowhere but offered a good opening to talk about it.
So good that he felt comfortable sharing his worry with you rather than sitting with it alone
Yes Anna. I was very happy about that.
Sandy, thank you for sharing that- we will be talking more about sharing information with our kids in next weeks webinar
With a young child, I've tried very hard not to hide treatments, to answer questions in age/developmentally appropriate language. There's a lot of conversation about my body being different, and different bodies needing different things to be healthy/ doing things to stay as healthy as possible, etc.
Chris that is great- and examples like what you are doing will be shared next week. A lot of parents have questions about how/what to share in terms of their CF
Just a point on the discussion of One Question—with that one question in our group we uncovered that parenthood was an interest of the patient, that she was interested in pregnancy in the next few years, and that she had many questions and worries around pregnancy!
we also briefly covered the differences between the scales
Is there a link for the next class? I think I may have missed the emails
Thanks guys! This was great
Thanks to you all! Great session and important work.
Thank you this was terrific.
Thank you for coming and participating!!
Thank you everyone for joining and participating!
Mary Beth Prieur
Thanks all! Great to see you!
Great info. Thank you