My Angel

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anonymous

New member
I have a 10month old baby with cf. We are Hispanics and I'm searching for Hispanics that have children with cf. I asked the Cf clinic were
we go for his treatment if they had any Hispanic children that came to the same hopital and they told me that Cf was not very common in Hispanics. My son was the only Baby Hispanic in there care. Then I found out that there were two other Hispanics but there were in there
teen years. I just want to now if there is anyone out there that is Hispanic and has some one with CF.
 
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julie

New member
I haven't heard of any on this particular board.... I'll keep my eyes and ears peeled though.

We'd love to have you join and chat and learn though, welcome to the site! I hope you stay.


Although I don't have CF, I am Hispanic.... Paternal grandfather was from Spain, born in Puerto Rico, moved to Hawaii where he married and had my father and uncle. My husband is 25 and has CF. Just thought I'd share, although I know that's not what you were looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Where are you located? I know at the non-accredited clinic we go to locally there are several individuals with small children who speak spanish, but we don't interact with anyone at our clinic because of germ/cross contamination issues. We're assigned to a private room where we stay until it's time to leave or time for labs.
 
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anonymous

New member
Hi- I am Hispanic (Mexican origin from both parents) and I have a 2 1/2 year old daughter with CF. My husband is of German/Irish/French descent. We attend the CF clinic at Children's Memorial in Chicago.

Maria (mom to three daughters, the youngest, Samantha w/cf)
 
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ReneeP

New member
Neither myself or my children are Hispanic but we live 5 miles from the Mexico border in a 90 - 95% Hispanic area. It does cause problems simply because CF is not very common here and almost every dr and nurse we run into is completely unfamiliar. We drive to San Antonio to the CF Clinic but if we have to see a regular dr or something here it's always an issue. They don't know much about CF and don't know how to treat the girls. I was told by our CF dr, however, that CF is becoming more and more common in Hispanics and that is a problem in itself because drs are hesitant to test Hispanic children for CF since they think it's so unlikely. For that reason many Hispanic children who actually do have CF go undiagnosed for a long time. Actually now that I think about it, when we were at clinic earlier this week there was a lady there with 3 children (all Hispanic) and 2 of the children have CF so I know it's not unheard of.
 
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JazzysMom

New member
It amazes me that people have difficulties getting tested for an illness because its "uncommon" in that race. If the symptoms are there & U dont know the family history (maybe there isnt 100% hispanic etc) then why not rule things out if nothing else. I do realize that much of it is lack of insurance & as well all know the testing can get expensive, but that is different than doctors ruling it out based on the ethnic backgroung of the patient.
 
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anonymous

New member
Hola! Maria thankyou for letting me now that there are hispanic mother dealing with a child with CF. When I found out that my baby had CF It was difficult to tell my family because they insisted that he couldent have cf because there was no history of cf in our family.
When I told my mother about the baby having cf she insisted that maybe the doctors were wrong. My mother is from Ciudad Acuna Mexico, my husband family is from Morelia Mexico. Both of our familys had no idea what cf was and at first they didnot wanted to deal with it. On my side of the family the only one that was hard to maker understand its my mother because she keeps saying that her prayers will make my baby be cf free. Some times I wish she was right ,especialy when me son is doing so well. We have our good days and bad days but as my mother says keep preying and he will be ok. I just take one day at a time and enjoy every single moment of life that we get to spend together. Maria if I write to you in spanish can you understand me?
 
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debs2girls

New member
I have the same problem, but with an african american child....they were reluctant to test for CF because of it......
 
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julie

New member
Totally nothing to do with the hispanic thing, but I am just about ready to start telling every doctor I see to make sure that his head isn't in or attached to his A*S! Good lord! (ok, done venting)
 
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anonymous

New member
To the original poster,

Your story is so familiar. My mother reacted in a very similar manner. She thought the diagnosis would be proven to be a mistake, she thought if she prayed enough it would go away. She has made a lot of progress now. She reads books about CF. The social worker from our CF clinic gave me a copy of a CF booklet written in Spanish from Mexico (not a translated English version). The booklet really has helped my mother understand the disease. Perhaps I can get one for you?

My mother is from Michoacan. She has family that currently live in Morelia. My father was born here in the U.S. but his family originated in Durango. If you would like, please email me: mdgoslin@comcast.net. Si puedo hablar, leer y escribir en espanol.

Maria
 
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anonymous

New member
We go to a nonaccredited clinic in Fargo, ND and I've noticed a couple different people in the waiting room when we've arrived who speak spanish. Liza
 
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anonymous

New member
Hello! I'm hispanic with cf son... You may born in latin america, but maybe you have some european ancestors, like us. I can say that I only born in Venezuela because my parents and grand parents all were eurpoeans. Is not about Hispanidad, it is about family history, family tree!.
If you have hotmail and want to talk my messenger is: comoestastu@hotmail.com, my son is 17 years old!
Everyone is invited!
Love - A mom of a CF'r
 
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anonymous

New member
PS: In Venezuela doctors don't learn about CF at the university because "it is a caucasians" disease. I knew children of every colors misdiagnosed and now dead because of that. You have a lot to learn... KNOWLEDGE IS POWER!
Love - Vicky
 
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CFTwins

New member
To the first poster... WELCOME! I don't have anything to report about being Hispanic and having CF, but I did want you to know that there are a few of us on this board from Iowa that attend UIHC. We have fraternal twins, both with CF, which is unusal too... so I think the docs ought to be getting used to "unique" CF circumstances! Perhaps we'll all see each other at the Family Education day this weekend?
My husband and I are attending... Best wishes.

Stacy
 
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