Jen, Congratulations on your pregnancy! Your baby is a blessing no
matter what genetic makeup it has. I concur with the previous
answers to your message. Don't stress about your husband being a
carrier. Even if you both are, there's only a 1 in 4 chance your
baby would even have it. Our daughter, age 9, takes horse back
riding lessons, has a fish and cat indoors and a dog outdoors. She
has asthma with her CF, but doesn't seem to have allergies to the
pets. If anything, they give her joy and comfort when she is feeling
down. I'm the one who has breathing problems due to the cat, but Zoe
pours out her heart and soul to that animal; so in our home it
stays.
Laurel
Hi Tanya! There is a lot of info on this in the Cystic-L archives. Here's
info on Cystic-L:
CYSTIC-L is a free email service dedicated to the exchange of information
and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been
sharing both casual banter about the varied impact that CF has on our
lives, as well as technical and medical information exchanges that help us
to overcome the more unpleasant factors that this silly little gene imposes
upon us. There are over 500 list subscribers sending a total of around
20-60 messages per day; a digest option is available which compiles
messages and distributes them periodically during the day. Members include
people with CF and those who share their lives: medical professionals,
scientists, researchers, parents, grandparents, spouses, siblings, friends
and significant others.
To subscribe send the following line in the *body* of an email (the
"Subject" line is ignored) to LISTSERV@...
SUBSCRIBE CYSTIC-L Your-first-name Your-last-name
@}->- @}->- @}->-
Visit us at Http://Cystic-L.org and see our extensive Handbook on-line
(contains much CF information, and references to other CF resources), the
Photo Archives (people with CF, parents with CF, subscribers to Cystic-L,
and a memorial page), the CF Shop, the world's largest cystic fibrosis
bookstore (in the CF Shop), and much more!
@}->- @}->- @}->-
At 05:00 PM 2/28/2004 +0000, you wrote:
> Hi, my name is Tanya and i have a daughter who is 3&1/2 with CF.
>I'm thinking about home schooling her due to the fact that she
>catches everything when around someone sick. Many people have
>differnt opions about this and i would like to hear others. If
>anyone does home school please, i would love to discuss it with you.
>Thank you all and good health to everyone.
>
>
>
>
>Yahoo! Groups Links
>
>
>
>
--
Check out the CYSTIC-L Homepage at http://www.Cystic-L.org
________________________________________________________________________
Ron Trueworthy . . . . . Your CYSTIC-L Host . . . . . . Ron@...
Hi, my name is Tanya and i have a daughter who is 3&1/2 with CF.
I'm thinking about home schooling her due to the fact that she
catches everything when around someone sick. Many people have
differnt opions about this and i would like to hear others. If
anyone does home school please, i would love to discuss it with you.
Thank you all and good health to everyone.
a value of 80 is high, a positive or negative value
depends upon the type of test run. Also you need to
have a genotype done before you can say yes or no to
CF. Our son has a high/borderline value but his
genotype indicates he is a carrier with symptoms like
his sister. In most cases the postive ID of CF will
not be made without genetic information.
Best of luck and stay healthy.
Terry
--- wulfluvr1 <Mrsmurffy@...> wrote:
> My son has had chronic lung infections, sinusitis,
> sinus surgeries,
> and malabsorption. We just did a sweat test
> yesterday and the doctor
> called back the same day and said his sweat test was
> positive with a
> level of 80.
> Is this diagnostic for CF?
> the doctor said it was.
> Also what if his sweat test is positive but he is
> negative for the CF
> mutations? Can he still have CF?
> I also have a daughter with the same symptoms. They
> have alot of
> infections...including pseudomonas.
> thanks Karen
>
>
__________________________________
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My son has had chronic lung infections, sinusitis, sinus surgeries,
and malabsorption. We just did a sweat test yesterday and the doctor
called back the same day and said his sweat test was positive with a
level of 80.
Is this diagnostic for CF?
the doctor said it was.
Also what if his sweat test is positive but he is negative for the CF
mutations? Can he still have CF?
I also have a daughter with the same symptoms. They have alot of
infections...including pseudomonas.
thanks Karen
Hello,
Having recently lost my wife to CF, I have started a Yahoo group of my
own that I invite you all to join, but especially those in Canada.
We are found at:
http://ca.groups.yahoo.com/group/cfcg
Thanks!
I am 29 with CF and just got a port i Oct. I was wanting to get in
the tanning bed. The surgeon that put my port in says I can not get
in the tanning bed. I was hoping that I could get in the tanning
bed this spring..Has anyone here got a port that still gets in the
tanning bed...Thanks...HOlly
Hi, you can goto http://www.ncbi.nlm.nih.gov/ and search Pubmed for
atypical cystic fibrosis. The scientific articles can be hard to
understand, but at least you can get an idea of the range of symptoms
that people can have with CF or something that seems like CF. Also at
the same website you can search OMIM for cystic fibrosis.
About 1000 mutations have been discovered in the CF gene so far.
There is a wide range in symptoms even in patients with the same CF
mutation. Good luck - I hope this helps, Eddie
--- In cysticfibrosissupport@yahoogroups.com, "sorka999"
<DLayman@n...> wrote:
> My son is going through testing for GI problems we have pretty much
> ruled out Celiac and the doc just ordered a random fecal fat test
> and trypsin test.. I know these are tests used in diagnosing CF
> Is it possible to have CF and only have the GI symptoms?
> Our son is 2, and has been at home his whole life basically
isolated
> except church functions and most of those with very few children..
> so he has not really had any colds etc.. and no other problems..
>
> I did not come across anything that addressed this question.
> Thanks
>
> Denise
You might want to checkout http://www.cfservicespharmacy.com - they
had some info on programs to help with the cost of some of
the prescription drugs. Good luck and I hope this helps - Eddie
--- In cysticfibrosissupport@yahoogroups.com, "betty_cate"
<betty_cate@y...> wrote:
> I have never had any dealings with anyone with CF until recently.
My
> best frien has a son who is my age. Praise God he is 31 years old.
> As you can emagine, things are getting pretty rough. He has had
two
> very serious accidents in his vehicle due to complications with his
> diabetes. He has had to take a leave of abcense from work (without
> pay) to get treated in the hospital and is now awaiting a telephone
> conferrence with the disability people. He does not have any
> insurance, out of work, and his wife is a 2nd grade school
teacher.
> He doesn't qualify for SSI because his wife makes too much money.
He
> is at the end of his ropes. He has enough meds to last him the
rest
> of this week and then he does not know what to do after that. How
can
> he get financial assistance and quickly? Is there anything out
there
> that we have not already looked into. We just keep getting the run
> around. Please HELP!!!
Hi There,
Sweat tests are considered the gold standard, but can
miss CF. My sweat tests are always in the negative or
borderline range. I do have confirmed CF. My CF was
re-confirmed based on symptoms and on the nasal
potential difference test (NPD). Sweat tests can in
some rare cases miss the CF diagnsois in children and
adults. I have severe lung disease and need a lung
transplant due to lung damage caused by frequent
infections. The bottom line is that if a child/adult
still has CF symptoms and should the sweat test be
normal or borderline push further. CF is NOT
necessarily ruled out or in based on sweat testing
alone.
There are also other diseases that can mimic CF that
need to be ruled out. All of this testing is best done
at a children's hospital that has a certified CF
clinic and other excpetional paediatric clinics.
Hugs:0)
Mary with atypical CF, possible bronchiolitis (?) and
asthma ... complicated lungs
--- sorka999 <DLayman@...> wrote:
---------------------------------
Yeah when I read that they have alot of salt in their
sweat I was
gonna run up to him and lick him.. hehe LOL
Thanks for the info and the prayers!
Denise
--- In cysticfibrosissupport@yahoogroups.com,
theemeraldwar@a...
wrote:
> The bottom line, when they order the sweat test that
is when you
will know
> about CF. My Daughter goes to Childrens Hospital of
PA, widely
known as one of
> if not the best treatment for CF. They do not play
games and go
right in on the
> sweat test, to date unless I am out of touch this is
still the
best way to
> diagnose CF. Wait for the sweat test. If it is not
ordered to give
you peace of
> mind, ask for one. Good Luck. We will pray for you.
>
>
> [Non-text portions of this message have been
removed]
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Yeah when I read that they have alot of salt in their sweat I was
gonna run up to him and lick him.. hehe LOL
Thanks for the info and the prayers!
Denise
--- In cysticfibrosissupport@yahoogroups.com, theemeraldwar@a...
wrote:
> The bottom line, when they order the sweat test that is when you
will know
> about CF. My Daughter goes to Childrens Hospital of PA, widely
known as one of
> if not the best treatment for CF. They do not play games and go
right in on the
> sweat test, to date unless I am out of touch this is still the
best way to
> diagnose CF. Wait for the sweat test. If it is not ordered to give
you peace of
> mind, ask for one. Good Luck. We will pray for you.
>
>
> [Non-text portions of this message have been removed]
The bottom line, when they order the sweat test that is when you will know
about CF. My Daughter goes to Childrens Hospital of PA, widely known as one of
if not the best treatment for CF. They do not play games and go right in on the
sweat test, to date unless I am out of touch this is still the best way to
diagnose CF. Wait for the sweat test. If it is not ordered to give you peace of
mind, ask for one. Good Luck. We will pray for you.
[Non-text portions of this message have been removed]
Is there any other reason to do a random fecal fat test and a
trypsin test than to rule out possible CF?
We have had an endoscopy for celiac, ruled out parasite,blood,virus
etc.. now he orderd those two tests I mentioned above.
Thanks!
Denise
I had a cousin with CF distant though. After that honestly we have found it
very difficult to trace this thing. But it is here now, and you have to both be
a carrier so we except what we deal with and live life enjoy it to the
fullest and thank God everyday that we are getting a chance to beat this thing.
Some
parents whose children are sick with other diseases or accidents, etc., do
not get a chance.
[Non-text portions of this message have been removed]
get a cf social worker to help you they know alot of things that we dont they
know how and where to get help.
[Non-text portions of this message have been removed]
Rats.. not what I wanted to hear.. but that is what life is one
unexpected thing after another!
I hadn't realized there was a GI component to CF till I looked up
what tests the GI was doing. Well we wait a week and see what we
see. Thanks
Denise
PS Does anyone else in your family have CF?
--- In cysticfibrosissupport@yahoogroups.com, theemeraldwar@a...
wrote:
> Our daughter was diagnosed in June due to GI problems. We had to
see a GI
> doctor who ordered a CF test just to be safe. Well turns out we
were safe and she
> did have it. She had problems with the bowel movement and
distended belly.
> Good Luck.
>
>
> [Non-text portions of this message have been removed]
Our daughter was diagnosed in June due to GI problems. We had to see a GI
doctor who ordered a CF test just to be safe. Well turns out we were safe and
she
did have it. She had problems with the bowel movement and distended belly.
Good Luck.
[Non-text portions of this message have been removed]
My son is going through testing for GI problems we have pretty much
ruled out Celiac and the doc just ordered a random fecal fat test
and trypsin test.. I know these are tests used in diagnosing CF
Is it possible to have CF and only have the GI symptoms?
Our son is 2, and has been at home his whole life basically isolated
except church functions and most of those with very few children..
so he has not really had any colds etc.. and no other problems..
I did not come across anything that addressed this question.
Thanks
Denise
I have never had any dealings with anyone with CF until recently. My
best frien has a son who is my age. Praise God he is 31 years old.
As you can emagine, things are getting pretty rough. He has had two
very serious accidents in his vehicle due to complications with his
diabetes. He has had to take a leave of abcense from work (without
pay) to get treated in the hospital and is now awaiting a telephone
conferrence with the disability people. He does not have any
insurance, out of work, and his wife is a 2nd grade school teacher.
He doesn't qualify for SSI because his wife makes too much money. He
is at the end of his ropes. He has enough meds to last him the rest
of this week and then he does not know what to do after that. How can
he get financial assistance and quickly? Is there anything out there
that we have not already looked into. We just keep getting the run
around. Please HELP!!!
Hi Jen,
Yes, your husband could still be a carrier, but that doesn't mean
your child will be born with CF. There's a 25% chance the a baby
will have cf, 50% chance that the child will be a carrier, and 25%
chance that the child will have no carrier genes or CF. There's also
a huge chance that your husband isn't a carrier. Try not to worry
about it until you know for sure. One in 25 people are carriers. I
nor my husband knew we were carriers until our second son was born
with CF. Even with all the prenatal tests and genetic tests, nobody
is gaurenteed a healthy baby. That's the risk we take becoming
parents. Most cases we're blessed with healthy children, and other
times we're even more blessed with a baby that just needs that much
more love from us :)
As far as animals go, we have a dog and a cat in the house, along
with 4 other dogs on the yard and cattle and horses. Our son is one
of the healthiest they see in clinic. It's an individual thing.
Good luck with your pregnancy...may it be easy and swift with the
same kind of labor :)
Carla
--- In cysticfibrosissupport@yahoogroups.com, "jen_lmc"
<jenmeyer79@y...> wrote:
> I am new to this group, as I am 6 weeks pregnant and just found out
> that I am a carrier for CF. The mutation was found in my pre-natal
> blood test. I had no idea I was a carrier. My husband is now being
> tested as well, but the results wont be back for a week and the
wait
> is causing me a lot of stress. Here is my question...
> The doctor told me that the clinic tests for 25 of the mutated
genes
> and there are 1000. Does this mean that if my husband's test comes
> back negative there is still a chance he could be a carrier (since
> they test for 25 of the mutations)? I have tried looking this up,
> but I am not understanding some of the articles I am reading and it
> is stressing me out.
>
> Now here is my un-important question that I cannot find the answer
> to...
> Can people with CF be around animals or does it cause more
difficulty
> in the breathing?
> Thanks,
> Jen
Hi I never knew what CF was and that me and my husband were carriers until my
son was born with it. I had three girls before and they did not get CFif
your husband does not carry the bad gene, there is still the possiblitie of your
gene being passed on too the baby but that doesnt mean they will have it only
that they are a carrier to have both parents have to carry the bad gene. Your
answer to the pets. Some people cant have them it affects the breathing but we
have a dog and my son does not have a problem with it, and he also has asthma
with the CF so he has double the trouble.
[Non-text portions of this message have been removed]
I am new to this group, as I am 6 weeks pregnant and just found out
that I am a carrier for CF. The mutation was found in my pre-natal
blood test. I had no idea I was a carrier. My husband is now being
tested as well, but the results wont be back for a week and the wait
is causing me a lot of stress. Here is my question...
The doctor told me that the clinic tests for 25 of the mutated genes
and there are 1000. Does this mean that if my husband's test comes
back negative there is still a chance he could be a carrier (since
they test for 25 of the mutations)? I have tried looking this up,
but I am not understanding some of the articles I am reading and it
is stressing me out.
Now here is my un-important question that I cannot find the answer
to...
Can people with CF be around animals or does it cause more difficulty
in the breathing?
Thanks,
Jen
Hey,
Just wanted to say I had a living related lobar transplant, now have
a lung capacity of 81%, and according to my transplant docs, have a
smaller chance of rejection than others, because of the close
matches with my Mom and Uncle. Obviously the matches would most
likely be closer than if you received lungs from a total stranger.
I received the right lower lobe from my uncle and the left lower
lobe from my mom. They turned the lobes sideways in my lungs, and
they are working great. It has now been 2 1/2 years, and I have a
good friend 3 1/2 years out of living related lobar transplant.
Hope this helps some.
Nutz
Yes, it does make the edges a little less blurry. But who knows? Maybe a cure
will be found tomorrow. Female cancer runs in my family, and I had it 6 years
ago after the birth of my daughter. That does not necessarily mean that I will
die from it. In fact, I was on the brink of death after a drunk driver hit me 10
years ago. I was in the hospital for a month, and then for 6 months off and on
after that. The only guarantees in this old world are taxes and death. Since we
know that it will happen to all of us sooner or later, why worry about it? We
firmly believe that an optimistic outlook is one of the best "medicines" around.
Please don't think that we live in a dream world, because we don't. We just
choose to enjoy the "here and now". It makes it all worth it!
~littlewolf
angel_in_limbo@... wrote:
Shawna -
Thanks for the info. I guess I should have my message a little
clearer though. I'm not involved personally with someone who has
CF...it's part of my job.
I'm glad that your husband is doing well and you both have such a
positive outlook. I know that for many people it is hard to keep
such a cheery perception when CF becomes a part of their life, but as
you said, you never what is going to happen to anyone any day of
their life. CF just makes the edges a little less blurry in that
department, unfortunately.
-s
--- In cysticfibrosissupport@yahoogroups.com, Shawna Rose
<littlewolf_26@y...> wrote:
> He-he, you sound like me 3 years ago! I married a man with CF, and
never imagined what I was getting in to! It has been more than worth
it, but there are a few important things to remember...
> 1. Be careful of perfumes ( body sprays, hair spray, candles, air
freshener, etc.)
> 2. NO SMOKE!! (candles, fires, fireplaces, etc.)
> 3. Use humidifiers
> 4. No closed areas w/ paint, glue, etc.
> 5. Be careful around farm animals (their poop will trigger
aspergillis)
> 6. Dust and vacuum WELL!
> 7. Give support without pity
> 8. Go to the doctor with them and ask questions
> 9. If you are sick, go to the doctor IMMEDIATELY! A simple cold for
you could be deadly to them.
> 10. WASH YOUR HANDS!!!
> But most of all, don't treat them any different than anyone
else. Don't focus on the disease or when they "might" pass on, but
the hear and now. My husband is on the transplant list and we are
being agressive with his disease. However, he does not let it get the
best of him, and he works as an AC/HVAC tech, is moving up quickly in
the company. He is a fabulous father and husband, and we do lots of
family things together. We are planning for the future and retirement
(even tho I am 29 & he is 34), and what the many years of our
marriage together will bring. We have dreams and goals, and we do not
let the disease dictate whether or not they will happen. Who
knows....I may be killed in an automobile accident tomorrow, but I am
not going to dwell on it! Treat CF the same way. Just like diabetes,
cancer, etc. as long as you do what you can to treat it, and keep a
POSITIVE state of mind, miracles can happen. I wish the best for you,
and you are on a great chat to get the support and
> information that you need. I wish I knew about this chat room
years ago!
>
> angel_in_limbo@h... wrote:
> I'm new to this crowd. I don't have CF, but I have a very close
> everyday tie to it. I'm here for information and to learn as much
as
> possible on a more up close and personal level. Thought I would
say
> hello to all here. :)
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
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>
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> [Non-text portions of this message have been removed]
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[Non-text portions of this message have been removed]
Shawna -
Thanks for the info. I guess I should have my message a little
clearer though. I'm not involved personally with someone who has
CF...it's part of my job.
I'm glad that your husband is doing well and you both have such a
positive outlook. I know that for many people it is hard to keep
such a cheery perception when CF becomes a part of their life, but as
you said, you never what is going to happen to anyone any day of
their life. CF just makes the edges a little less blurry in that
department, unfortunately.
-s
--- In cysticfibrosissupport@yahoogroups.com, Shawna Rose
<littlewolf_26@y...> wrote:
> He-he, you sound like me 3 years ago! I married a man with CF, and
never imagined what I was getting in to! It has been more than worth
it, but there are a few important things to remember...
> 1. Be careful of perfumes ( body sprays, hair spray, candles, air
freshener, etc.)
> 2. NO SMOKE!! (candles, fires, fireplaces, etc.)
> 3. Use humidifiers
> 4. No closed areas w/ paint, glue, etc.
> 5. Be careful around farm animals (their poop will trigger
aspergillis)
> 6. Dust and vacuum WELL!
> 7. Give support without pity
> 8. Go to the doctor with them and ask questions
> 9. If you are sick, go to the doctor IMMEDIATELY! A simple cold for
you could be deadly to them.
> 10. WASH YOUR HANDS!!!
> But most of all, don't treat them any different than anyone
else. Don't focus on the disease or when they "might" pass on, but
the hear and now. My husband is on the transplant list and we are
being agressive with his disease. However, he does not let it get the
best of him, and he works as an AC/HVAC tech, is moving up quickly in
the company. He is a fabulous father and husband, and we do lots of
family things together. We are planning for the future and retirement
(even tho I am 29 & he is 34), and what the many years of our
marriage together will bring. We have dreams and goals, and we do not
let the disease dictate whether or not they will happen. Who
knows....I may be killed in an automobile accident tomorrow, but I am
not going to dwell on it! Treat CF the same way. Just like diabetes,
cancer, etc. as long as you do what you can to treat it, and keep a
POSITIVE state of mind, miracles can happen. I wish the best for you,
and you are on a great chat to get the support and
> information that you need. I wish I knew about this chat room
years ago!
>
> angel_in_limbo@h... wrote:
> I'm new to this crowd. I don't have CF, but I have a very close
> everyday tie to it. I'm here for information and to learn as much
as
> possible on a more up close and personal level. Thought I would
say
> hello to all here. :)
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
> To visit your group on the web, go to:
> http://groups.yahoo.com/group/cysticfibrosissupport/
>
> To unsubscribe from this group, send an email to:
> cysticfibrosissupport-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! SiteBuilder - Free web site building tool. Try it!
>
> [Non-text portions of this message have been removed]
He-he, you sound like me 3 years ago! I married a man with CF, and never
imagined what I was getting in to! It has been more than worth it, but there are
a few important things to remember...
1. Be careful of perfumes ( body sprays, hair spray, candles, air freshener,
etc.)
2. NO SMOKE!! (candles, fires, fireplaces, etc.)
3. Use humidifiers
4. No closed areas w/ paint, glue, etc.
5. Be careful around farm animals (their poop will trigger aspergillis)
6. Dust and vacuum WELL!
7. Give support without pity
8. Go to the doctor with them and ask questions
9. If you are sick, go to the doctor IMMEDIATELY! A simple cold for you could be
deadly to them.
10. WASH YOUR HANDS!!!
But most of all, don't treat them any different than anyone else. Don't focus
on the disease or when they "might" pass on, but the hear and now. My husband is
on the transplant list and we are being agressive with his disease. However, he
does not let it get the best of him, and he works as an AC/HVAC tech, is moving
up quickly in the company. He is a fabulous father and husband, and we do lots
of family things together. We are planning for the future and retirement (even
tho I am 29 & he is 34), and what the many years of our marriage together will
bring. We have dreams and goals, and we do not let the disease dictate whether
or not they will happen. Who knows....I may be killed in an automobile accident
tomorrow, but I am not going to dwell on it! Treat CF the same way. Just like
diabetes, cancer, etc. as long as you do what you can to treat it, and keep a
POSITIVE state of mind, miracles can happen. I wish the best for you, and you
are on a great chat to get the support and
information that you need. I wish I knew about this chat room years ago!
angel_in_limbo@... wrote:
I'm new to this crowd. I don't have CF, but I have a very close
everyday tie to it. I'm here for information and to learn as much as
possible on a more up close and personal level. Thought I would say
hello to all here. :)
Yahoo! Groups SponsorADVERTISEMENT
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[Non-text portions of this message have been removed]
I'm new to this crowd. I don't have CF, but I have a very close
everyday tie to it. I'm here for information and to learn as much as
possible on a more up close and personal level. Thought I would say
hello to all here. :)
Hello, My name is Vikki and I am part of a team setting up Post Pals,
which securely features children aged between 2 and 18 in the UK with
a serious illness, our first Pal is just 9 and has Leukaemia.
Each month five "Pals" are featured; along with some background
details and their medical story. Members of the public log on and
send letters, cards and small gifts, without expecting a reply.
Receiving something as simple as a card in the post can really
brighten a day and can cheer up a child who has very little to smile
about.
I was wondering if any of you would be interested in writing to a Pal
or Pals? There's no commitment, you can write as little or as often
as you like. Every month more Pals will be featured and the site
will be updated.
For more information see www.postpals.co.uk or email me at
viks@...
Thank you on behalf of those who are smiling because of people like
you
Best Wishes,
Vikki
For those who care, Frankie one of the stars of the new season of
the Real World is 21 living with CF. Interesting character, we
started watching the show to see how it was, since our Daughter is
only 2 living with CF, in our short time we have not seen anyone
with CF minus the hospital, so it is interesting for us to see it.
We are only 30 and 31, so it may be an age gap for some people, but
for younger parents like us, it is something you may want to watch.
It seems like it is on, on Tuesdays at 10:00. It is the Real World
San Diego.