Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi Danelle, you're not alone, even not on this list, but you are right that is is difficult to find info about black CF patients. I have copied below one article that says, that in 1997 there were 600 black CF patients in the CF Foundation National Patient Registry. I don't know how they classify biracial patients. Maybe you should contact your local CFF chapter or the CFF itself to ask for additional info. May I ask what mutations Chas has? Peace Torsten, dad of Fiona 5wcf J Pediatr 1998 Feb;132(2):255-9 Related Articles, Links Comment in: J Pediatr. 1998 Feb;132(2):202-3. J Pediatr. 1999 Jan;134(1):122-3. Comparison of the clinical manifestations of cystic fibrosis in black and white patients. Hamosh A, Fitz- SC, Macek M Jr, Knowles MR, Rosenstein BJ, Cutting GR. Department of Pediatrics and Center for Medical Genetics, s Hopkins University School of Medicine, Baltimore, land 21287- 3914, USA. No large-scale studies of the incidence or disease severity of cystic fibrosis (CF) in black patients have been reported to date. In this study, the CF Foundation National Patient Registry was used to establish new incidence figures and to compare the clinical status of U.S. black (n = 601) and white patients (n = 17,755) with CE Results indicate that the incidence of CF is approximately 1 in 3,200 white and 1 in 15,000 black live births in the United States. Black patients with CF are currently, and were at diagnosis, younger and have poorer nutritional status and pulmonary function than white patients with CF. Fewer have meconium ileus, but more have distal intestinal obstruction syndrome. To control for genotype, each black deltaF508 homozygote (n = 47) was compared with four age- and sex- matched white deltaF508 homozygotes. Only the difference in nutritional status remained. The deltaF508 mutation is associated with higher levels of meconium ileus than other genotypes, independent of race. In conclusion, the clinical manifestations of CF are similar in black and white patients except for poorer nutritional status in black patients, which appears to be independent of age and genotype. PMID: 9506637 [PubMed - indexed for MEDLINE] > Hi! I was wondering if anyone out there knows someone with CF who is of another race than Caucasian. My son is mixed with black and white and as far as I know he is the only in our are that is mixed with another race. I have found very little research on children of black descent that have CF. I knew nothing of the disease before his diagnosis except that it was genetic and there is no cure. I am still very scared about what it will mean for him as a growing child. I guess I just try to keep educating myself. > > Thanks, le mom of Chas (18 moss) wcf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 In a message dated 2/3/2003 11:41:23 PM Central Standard Time, sauerd74@... writes: > Hi! I was wondering if anyone out there knows someone with CF who is of > another race than Caucasian. My son is mixed with black and white and as > far as I know he is the only in our are that is mixed with another race. I > have found very little research on children of black descent that have CF. > I knew nothing of the disease before his diagnosis except that it was > genetic and there is no cure. I am still very scared about what it will > mean for him as a growing child. I guess I just try to keep educating > myself. > > Thanks, le mom of Chas (18 moss) wcf You need to talk to ! WHERE ARE YOU??? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi le, When I was living in Oklahoma, I met a young mom and her two beautiful daughters; the youngest had CF. This was probably around 1997--can't really remember, and the little girl was about a year old at the time. The girls' dad is black and at that time, they couldn't identify which CF gene he had. The mom carried the DeltaF508 gene. I'm embarrassed to say that I can't remember the mom's name. We met a couple times and our children used the same CF specialist (we didn't use the CF Center at Children's Hospital). If you want to make contact with other African American/Caucasion's affected by CF, then email me privately and I'll send you the doctor's name. If they're still patients of his, then perhaps he or his nurse will pass along your name and contact info to that mom. Kim Mom of (23 1/2 with cf and asthma) and (20 with asthma and CF) Hi! I was wondering if anyone out there knows someone with CF who is of another race than Caucasian. My son is mixed with black and white and as far as I know he is the only in our are that is mixed with another race. I have found very little research on children of black descent that have CF. I knew nothing of the disease before his diagnosis except that it was genetic and there is no cure. I am still very scared about what it will mean for him as a growing child. I guess I just try to keep educating myself. Thanks, le mom of Chas (18 moss) wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 le, T. from this group is black and of course has Milan. I have a friend in Hawaii who is Caucasian (from England actually) and her husband is black. They have two daughters, one with CF and one without. CHristy > Hi! I was wondering if anyone out there knows someone with CF who is of another race than Caucasian. My son is mixed with black and white and as far as I know he is the only in our are that is mixed with another race. I have found very little research on children of black descent that have CF. I knew nothing of the disease before his diagnosis except that it was genetic and there is no cure. I am still very scared about what it will mean for him as a growing child. I guess I just try to keep educating myself. > > Thanks, le mom of Chas (18 moss) wcf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 le, Here in Colorado I have friends whose daughter has cf. Her mom is white and dad is black. They have 4 kids and it worked out exactly like to textbook genetics square: 1 with cf, 2 carriers, one no carrier. -Lenora >le, > T. from this group is black and of course has Milan. I have a >friend in Hawaii who is Caucasian (from England actually) and her >husband is black. They have two daughters, one with CF and one >without. >CHristy > > > > >> Hi! I was wondering if anyone out there knows someone with CF who >is of another race than Caucasian. My son is mixed with black and >white and as far as I know he is the only in our are that is mixed >with another race. I have found very little research on children of >black descent that have CF. I knew nothing of the disease before his >diagnosis except that it was genetic and there is no cure. I am still >very scared about what it will mean for him as a growing child. I >guess I just try to keep educating myself. >> >> Thanks, le mom of Chas (18 moss) wcf >> >> Quote Link to comment Share on other sites More sharing options...
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