My twins are 8 months old now. They were diagnosed at 4 weeks. It was a total shock- I had a screen when pregnant with my first and it was negative- guess it was a false negative. I think that we have a realistic view of CF. We have family living with it and doing well. I was going to school originally for genetic counseling and switch after undergrad to teaching- so I know the research and the science of the disease. My struggle right now is balancing being mom and thinking with my heart and being a scientist and thinking with my brain- I know there is a balance but I am struggling. I am also finding it hard to find a place to turn. I don't talk to family because they FREAK OUT at the littlest change and I need support, not another person to comfort. After 8 months my friends are tired of listening. My husband is an awesome support and we are dealing together. Someone suggested support group- but between working full time, the twins and the three year old- where do I find the time. BUT I need an outlet. Counseling helps- but even there I feel like I am putting on a front. Not only am I raising twins- they have a lot of needs. I am tired, I feel helpless, I feel disheartened and unable to keep all the balls in the air. I have a three year old- no symptoms of CF, never even a sniffle or a poor weight gain. They say I have to sweat test her, and I know I do- but I am afraid. I feel like I still have control there (even if it is imagined). Where do you turn?
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Where do you turn...
- Thread starter emacsurak
- Start date
Aboveallislove
Super Moderator
Dear Mom,
I'm so sorry for what you are going through. I know for me, I didn't even turn here until DS was about 2 b/c I didn't want to hear about what I knew was the potential/reality. What helped then and what helps now and what may help you given your science background is to focus on the science and learn all you can about the advancement. I have no science background but started reading all the literature posted at the national CF conferences, reading all the press releases from Vertex and following the stock message boards and finding some other CF parents who actually posted some amazing info. There is a facebook group called Praying for 770/809 success or something like that that has postings of the positives that Kalydeco has made to so many and folks in the trials for other next generation drugs and a couple of good folks who post all the updates. I guess that's where I'd start with my time--you can do it before bed or in the am without having to go out of the house etc. And honestly, I firmly believe in 5 years they will have meds that make CF a controlled disease and your little ones aren't even a year!! And you must be soooo exhausted. I can't even imagine what you have on your plate.
Are you familiar with Kalydeco? Do you know your twins 2 mutations? Are you following any of the research pipelines??
I'm so sorry for what you are going through. I know for me, I didn't even turn here until DS was about 2 b/c I didn't want to hear about what I knew was the potential/reality. What helped then and what helps now and what may help you given your science background is to focus on the science and learn all you can about the advancement. I have no science background but started reading all the literature posted at the national CF conferences, reading all the press releases from Vertex and following the stock message boards and finding some other CF parents who actually posted some amazing info. There is a facebook group called Praying for 770/809 success or something like that that has postings of the positives that Kalydeco has made to so many and folks in the trials for other next generation drugs and a couple of good folks who post all the updates. I guess that's where I'd start with my time--you can do it before bed or in the am without having to go out of the house etc. And honestly, I firmly believe in 5 years they will have meds that make CF a controlled disease and your little ones aren't even a year!! And you must be soooo exhausted. I can't even imagine what you have on your plate.
Are you familiar with Kalydeco? Do you know your twins 2 mutations? Are you following any of the research pipelines??
I find e-mailing a pen pal I met on this forum helpful. I would be happy to E-mail with you. My situation is quite different in the my daughter has been sick since birth and is now treated for CF, but not officially diagnosed. Due to my daughter my doctor had me tested and I am now officially diagnosed with CF and treated for it and feeling so much better. I have 2 pen pals one who has children in a similar situation and one who is an adult diagnosis of CF. Writing them verses venting to family has truly saved my marriage.
You may find someone in a similar situation if you post in the family section looking for an E-mail penpal. If you want to E-mail send me a private message and I will send my E-mail.
You may find someone in a similar situation if you post in the family section looking for an E-mail penpal. If you want to E-mail send me a private message and I will send my E-mail.
We have a 3 and 4 year old ( practically twins) and when our 3 baby was born and diagnosed with cf 10 days later I panicked. ( omg the other two must have it). They were screened for it at birth and we have since had them sweat tested. Sons number was 7, daughters number was 12. Baby's number was 97, obviously cf. hang in there.
Thanks! I will post and see if there is someone in a similar situation in the Family section- thank you for the offer of pen pal-ing. I may take you up on that!
The girls are both homozygouys df508. They are identical- so what ever ones genes say- so does the other. I have been reading the research and that is helping. df508 doesn't really have any wonder drug yet- but they think in the next 10 years. The reserach has coem so far! The best advice I got was, "With the advances in medicine- you don't need to worry about having twins with CF, you need to worry about 3 girls in HS, college and then weddings all at the same time."
Thank you for the posts. Reading them really helps! I will look into Kalydeco as well- I was not really that familiar with everything as the girls are still so young and everything is so hectic right now.
The girls are both homozygouys df508. They are identical- so what ever ones genes say- so does the other. I have been reading the research and that is helping. df508 doesn't really have any wonder drug yet- but they think in the next 10 years. The reserach has coem so far! The best advice I got was, "With the advances in medicine- you don't need to worry about having twins with CF, you need to worry about 3 girls in HS, college and then weddings all at the same time."
Thank you for the posts. Reading them really helps! I will look into Kalydeco as well- I was not really that familiar with everything as the girls are still so young and everything is so hectic right now.
Aboveallislove
Super Moderator
2 years for combo for dd508 . That is what our son has too. Pm me if you need to chat. Not in your exact situation, but 3.5 year old with same mutations. In ten years a virtual cure, but 2. Years for first steps and four for next.
When DS was diagnosed, the local CF doctor put me in contact with a few local moms; however, DS was the first child in our area diagnosed in a very long time, so when those mom's called me it was depressing. One told me how awful the first couple years were with her son being in and out of the hospital. I was terrified. Thankfully, I found this site. And we were fortunate that DS was relatively healthy that first year. We got into a routine with daycare, work, treatments....
While there's a local support group, it's primarily for a statewide association and I don't like how they spend their money or their fundraising techniques.
Also, the CFF began having Great Strides Walks the year DS was diagnosed, so we gradually met people thru that. Organized some other fundraising activities -- pancake feeds, rummage sales... While we're all busy with work and our kids, we talk back and forth via email or facebook, compare notes over beers during commitee meetings...
While there's a local support group, it's primarily for a statewide association and I don't like how they spend their money or their fundraising techniques.
Also, the CFF began having Great Strides Walks the year DS was diagnosed, so we gradually met people thru that. Organized some other fundraising activities -- pancake feeds, rummage sales... While we're all busy with work and our kids, we talk back and forth via email or facebook, compare notes over beers during commitee meetings...
I agree with the emailing a friend and using this website. It is so meaningful to talk to someone who understands that you are not defending yourself or reexplaining everything. And I can not imagine the kind of stress you must be under but what a beautiful family you must have!! Congratulations!!
ForeverDance
New member
My DD (17 months) is ddF508. Our situations aren't exactly the same but I do have another daugther (15 years) and a step-son (18 years). We were actually quite worried about my step-son when our daughter was diagnosed because he has had asthma and breathing problems his whole life. He was sweat tested and does not have CF but I understand the worry. Feel free to PM me if you like. I would be happy to exchange emails. I have a very supportive family but I tend to keep the worries etc to myself because I don't like to worry them so I can understand where you are coming from.
I think its normal to feel that way! We all feel overwhelmed at times! I have CF myself and sometimes i find it hard to cope with it exactly because except for my parents i cant talk to anyone about it. They wouldn't understand. Even my parents dont at times. This site is amazing. You can find a lot of people you can relate to. CF is a battle. CF is a marathon. Take a deep breath and dont give up. Better days are coming for all of us.