Cystic Fibrosis FAQs

Frequently Asked Questions

Is there a question you always wanted answered regarding anything to do with CF, or anything related to CF?

Were you too afraid to ask, for fear of appearing uneducated? (Which you would never look of course! We all need to learn things from somewhere.)

Have you always wanted to find out, but didnt know how?

Here we hope to offer a way for those answers to be found. Of course, there are only Emily and I, and perhaps a few other helpful souls, researching the topics ourselves, if we don't already know. Although, please be aware that this may not be 100% correct but we naturally aim to be as precise as we can, talking to professionals where appropriate.

You have the option to submit the question anonymously, as all questions and answers will be posted on this page for others to see.
Please allow us a few days to respond with answers, depending on how many questions we receive, otherwise, ask away!

Please check through previous responses before asking your question, as it may have been asked and answered already!

Questions and Answers

Question:

376	Date: 2006-07-10 Time: 18:22:05	Name: Anon
	what are the early systoms of cystic fibrosis?

Question:

375	Date: 2006-07-10 Time: 18:12:40	Name: jeanette
	what are the early symptoms?

Question:

325	Date: 2006-08-01 Time: 18:26:28	Name: Anon
	do both parents have to be carriers of CF, in order for the unborn child to have it?

Question:

238	Date: 2006-07-28 Time: 14:52:08	Name: jacqueline
	how long of a life expectancy does an adult have that has been diagnosed. Please help my sister has this. Is their any cure?

Question:

217	Date: 2006-07-21 Time: 03:28:28	Name: Anon
	what is staph

Question:

216	Date: 2006-07-21 Time: 03:26:58	Name: Bianca Anderson
	What is psudemonas?

Question:

215	Date: 2007-06-12 Time: 20:45:27	Name: Louise Snowden
	How does fibrosis affect the body

Question:

214	Date: 2007-06-10 Time: 17:00:36	Name: Anon
	what do "fatty stools" look like?

Question:

213	Date: 2007-06-05 Time: 23:57:30	Name: Gemma
	who is the oldest person to live with cf? how old were they? where did they come from?

Question:

212	Date: 2007-06-03 Time: 00:31:18	Name: mary moore
	does cf hae much the same symptons as for asthma

Question:

211	Date: 2007-06-03 Time: 00:17:31	Name: Lauren
	WHEN WAS IT THAT CYSTIC FIBROSIS WAS DISCOVERED AND WHAT KIND OF TREATMENT WAS GIVEN THEN

Question:

210	Date: 2007-05-31 Time: 10:23:02	Name: APRIL
	I AM A CARRIER FOR R117H, AND IM 25 WEEKS PREGNANT. IM CONCERNED MY BABY IS AT RISK? MY HUSBAND IS AFRICAN AMERICAN/HINDU SO IM TOLD HE HAS A LOW RISK OF CARRYIN THE GENE, BUT IM CURIOUS AT WHAT THIS FORM IS AND THE CHANCES MY UNBORN SON WILL GET THIS? ANY ADVICE WOULD BE GREAT... THANKS!

Question:

209	Date: 2007-05-30 Time: 11:04:52	Name: Anon
	how old will a person live to be if they have severe cf,a liver disease and a bad pancrease?

Question:

208	Date: 2007-05-29 Time: 00:45:14	Name: robin
	what is cf?

Question:

207	Date: 2007-05-29 Time: 00:44:10	Name: Robin E. Johnson
	where did cystic fibrosis gets its name from?

Question:

206	Date: 2007-05-28 Time: 05:43:36	Name: Abby
	The average life expectancy is 31. There is not yet a cure but the faulty gene has been identified and they are getting steadily closer to a cure through gene therapy.

Question:

205	Date: 2007-05-28 Time: 05:43:24	Name: Abby
	The average life expectancy is 31. There is not yet a cure but the faulty gene has been identified and they are getting steadily closer to a cure through gene therapy.

Question:

204	Date: 2007-05-27 Time: 18:14:02	Name: Abby
	Cystic fibrosis is a scientific term. Initially named Mucoviscidosis,(arising from the sticky or viscous mucus that characterizes CF) the name was later changed to Cystic Fibrosis. The name cystic fibrosis derives from the fibrous scar tissue which develops in the pancreas.

Question:

203	Date: 2007-05-27 Time: 18:13:33	Name: Abby
	Cystic fibrosis is a scientific term. Initially named Mucoviscidosis,(arising from the sticky or viscous mucus that characterizes CF) the name was later changed to Cystic Fibrosis. The name cystic fibrosis derives from the fibrous scar tissue which develops in the pancreas.

Question:

202	Date: 2007-05-27 Time: 18:13:24	Name: Abby
	Cystic fibrosis is a scientific term. Initially named Mucoviscidosis,(arising from the sticky or viscous mucus that characterizes CF) the name was later changed to Cystic Fibrosis. The name cystic fibrosis derives from the fibrous scar tissue which develops in the pancreas.

Question:

201	Date: 2007-05-26 Time: 21:20:19	Name: Anon
	I carry a rare gene of cyctic fibrosis, does that mean that one of my parents carries it or does it skip, and does it pass on to my children?

Question:

200	Date: 2007-05-20 Time: 00:24:50	Name: rocky
	How you would carry out a hazard identification and risk assessment of Cystic Fibrosis pateint in the family.

Question:

199	Date: 2007-05-15 Time: 19:04:19	Name: kgyovdmn
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Question:

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Question:

197	Date: 2007-05-10 Time: 00:39:26	Name: Anon
	My sister's daughter has CF. my sister is quite naturally struggling to cope with the emotional side of this. I think it would help her to talk to others 'in the same boat', but she won't even discuss it. I want to support her but don't know how. Please help.

Question:

196	Date: 2007-05-09 Time: 21:18:38	Name: kaya
	what is the scientific name for cystic fibrosis?

Question:

195	Date: 2007-05-08 Time: 09:51:08	Name: Anon
	what causes fibrosis

Question:

194	Date: 2007-05-07 Time: 01:22:46	Name: Geraldine McCann
	I have the cystic fibrosis gene what does this mean for my unborn baby? I have a healthy 9 month old baby, he does not have the gene or has CF. For my first pregnancy, my doctor did not test for the gene, I was stunned when my doctor called me last week to inform me of this. I am 13 weeks pregnant now, and I am extremely concerned. Can some one please help???

Question:

193	Date: 2007-04-28 Time: 08:49:52	Name: Anon
	if you were born with cysitic fibrosis, how long do you have to live?

Question:

192	Date: 2007-04-28 Time: 05:13:55	Name: cindy hemphill
	can you find out if a unborn baby has cystic fibrosis if not then at what age?

Question:

191	Date: 2007-04-27 Time: 02:41:52	Name: cindy hemphill
	can you find out if a unborn baby has cystic fibrosis if not then at what age?

Question:

190	Date: 2007-04-27 Time: 17:05:56	Name: Anon
	what is cf67

Question:

189	Date: 2007-04-20 Time: 22:30:58	Name: Carolann
	My husband has been having phlebotomies for 20 years. Then we found he was anemic. The reason for the phle. was because he has thick blood which captures the iron. Now his hemotologist "hinted" he has a "touch" of CF. He further alluded that he could "get" leukemia. What are the connections? Our next step is another specialist. Were these "hints" thrown out because my husband requested blood test every other month rather than each month?

Question:

188	Date: 2007-04-17 Time: 02:19:32	Name: Anon
	How did cystic fibrosis get its name?

Question:

187	Date: 2007-04-16 Time: 01:36:16	Name: Erida Kazmaj
	Who is the person that discovered the cyctic fibroses disease, and who did find a treatment for cyctic fibroses. Would you struggle with no treatment.

Question:

186	Date: 2007-04-16 Time: 01:19:31	Name: Erida Kazmaj
	Who is the person that discovered the cyctic fibroses disease, and who did find a treatment for cyctic fibroses.

Question:

185	Date: 2007-04-15 Time: 00:29:02	Name: Anon
	How did cystic fibrosis get its name?

Question:

184	Date: 2007-04-14 Time: 12:03:50	Name: Kelly Day
	a child age 8yrs has CF in advanced stages...would he/she be a candidate for a lung transplant? Or would a child this young not benefit, prolong quality of life?

Question:

183	Date: 2007-04-11 Time: 02:36:23	Name: Lori
	How did cystic fibrosis get its name?

Question:

182	Date: 2007-04-02 Time: 21:13:57	Name: Tanya Pinkney
	Im havin trouble keeping food in me. Within 30 mins of eatin i ave 2 run 2 the loo. As it's goin straight through me. I'm taking Creon 5x40,000&1x25,000 wiv a main meal & 1x25,000&2x40,000 wiv a snack.Ive tried 2 take Creon @ begining of meals & sum in the middle i've also tried changin my diet. There's still no change.I've bin like this 4 nearly 3 wks now Wat can i do?

Question:

181	Date: 2007-03-29 Time: 06:36:41	Name: Caroline
	How did Cystic Fibrosis get its name?

Question:

180	Date: 2007-03-27 Time: 10:38:32	Name: Kelly
	how did cystic fibrosis get its name

Question:

179	Date: 2007-03-21 Time: 00:21:53	Name: Anon
	why do people die from cystic fibrosis? Couldn't you just strengthen their lungs?

Question:

178	Date: 2007-02-23 Time: 15:46:17	Name: uzwranlp
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Question:

177	Date: 2007-02-23 Time: 15:44:45	Name: anklwrhw
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Question:

176	Date: 2007-02-23 Time: 15:43:53	Name: meyygkee
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175	Date: 2007-02-23 Time: 15:42:54	Name: ycnoacce
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Question:

174	Date: 2007-02-23 Time: 15:41:37	Name: ejdmrhva
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Question:

173	Date: 2007-02-23 Time: 15:40:34	Name: cfduoauc
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Question:

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Question:

171	Date: 2007-02-23 Time: 15:38:45	Name: gckxlbwe
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Question:

170	Date: 2007-02-23 Time: 15:37:30	Name: oemdtloe
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Question:

169	Date: 2007-02-17 Time: 03:30:59	Name: Anon
	what?

Question:

168	Date: 2007-02-17 Time: 03:30:17	Name: hunter carroll
	what do people in the united states think about cystic fibrosis

Question:

167	Date: 2007-02-13 Time: 08:42:06	Name: Anon
	how did cystic fibrosis get its name?

Question:

166	Date: 2007-02-12 Time: 19:45:50	Name: liz
	how did CF get its name?

Question:

165	Date: 2007-02-09 Time: 09:03:42	Name: Anonomus
	what is cystic fibrosis ?

Question:

164	Date: 2007-02-02 Time: 04:35:44	Name: Anon
	How many children are born each year with Cystic Fibrosis in the US?

Question:

163	Date: 2007-02-01 Time: 01:57:38	Name: Ariel
	how did cyctic fibrosis get its name?

Question:

162	Date: 2007-02-01 Time: 00:07:45	Name: Melanie
	Why do CF patients sweat taste salty if they have a defect in CFTR which decreases chloride ions from getting into the mucosa out of the epithelial cell?

Question:

161	Date: 2007-01-28 Time: 09:24:31	Name: Anon
	how do I find out what class my mutation falls under?

Question:

160	Date: 2007-01-26 Time: 22:51:33	Name: mpxkmzhm
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Question:

159	Date: 2007-01-26 Time: 22:50:33	Name: ebhwoymr
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Question:

158	Date: 2007-01-24 Time: 00:56:57	Name: Anon
	what are the disabilities could occur inctstic fibeosis

Question:

157	Date: 2007-01-24 Time: 00:54:36	Name: Anon
	what disabilies could occur from cystic fibrosis?

Question:

156	Date: 2007-01-24 Time: 00:53:09	Name: Anon
	what disabilities could occur from this disorder?

Question:

155	Date: 2007-01-23 Time: 21:14:39	Name: Shana
	My question is my son had a sweat and chloride down jan 19,2007.I got the results from his dr by phone this morning.borderline is 50 and my son is at 50.we are schedule to go to the u of m for another sweat and chloride test and pulm.testing and to see a pulmonologist in amonth.How likely is it that at 8 yrs old my son has cystic fibrosis?He has asthma and fool allergies and this season he has been very ill and can't seem to get 100% better.What is the odds at his age he could have cf? Shana

Question:

154	Date: 2007-01-23 Time: 05:32:21	Name: Anon
	What is another name for cystic fibrosis?

Question:

153	Date: 2007-01-18 Time: 10:05:34	Name: twswvjse
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Question:

152	Date: 2007-01-18 Time: 10:04:57	Name: hbhtqyhs
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Question:

151	Date: 2007-01-18 Time: 10:04:16	Name: iyydedic
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Question:

150	Date: 2007-01-12 Time: 23:26:23	Name: Anon
	I am pregnant should i carry on taking creon 2500

Question:

149	Date: 2007-01-12 Time: 10:03:22	Name: bob
	How old was the oldest person to live with CF?

Question:

148	Date: 2007-01-10 Time: 21:22:35	Name: sarah
	How did cystc fibrosis get its name?

Question:

147	Date: 2007-01-09 Time: 07:34:49	Name: Anon
	how long of a life expectancy does an adult have that has been diagnosed.

Question:

146	Date: 2007-01-09 Time: 07:00:46	Name: Delta
	How did Cystic Fibrosis get it's name.

Question:

145	Date: 2007-01-09 Time: 06:52:33	Name: Anon
	where did cystic fibrosis get its name

Question:

144	Date: 2007-01-09 Time: 06:51:26	Name: Anon
	name for cystic fibrosis ?

Question:

143	Date: 2007-01-09 Time: 06:49:43	Name: Anon
	where did cystic fibrosis get its name

Question:

142	Date: 2007-01-09 Time: 06:48:38	Name: vufdhhao
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Question:

141	Date: 2007-01-09 Time: 06:48:36	Name: kyle bewley
	where did cystic fibrosis get its name?

Question:

140	Date: 2007-01-06 Time: 17:25:17	Name: mary l terlak
	what is cf

Question:

139	Date: 2007-01-06 Time: 05:23:56	Name: Courtney
	How is Cystic Fibrosis pass to the offspring?

Question:

138	Date: 2007-01-03 Time: 06:36:32	Name: Anon
	How did Cystic Fibrosis get its name?

Question:

137	Date: 2006-12-30 Time: 00:16:58	Name: bob
	how old is the oldest person that has lived with cystic fibrosis?

Question:

136	Date: 2006-12-30 Time: 00:16:02	Name: bob
	how old is the oldest person to live with cystic fibrosis?

Question:

135	Date: 2006-12-24 Time: 23:43:41	Name: Jasmine
	hiya jus a quick question to those with cf ow do u cope with this illness cos i find it hard ?

Question:

134	Date: 2006-12-22 Time: 08:38:18	Name: Anon
	Is there a connection between CF and the clubbing of fingers?

Question:

133	Date: 2006-12-13 Time: 00:07:25	Name: Anon
	where did cystic fibrosis get its name from

Question:

132	Date: 2006-12-12 Time: 19:12:10	Name: Anon
	how did cyctic fibrosis get its name?

Question:

131	Date: 2006-12-11 Time: 02:36:59	Name: meg gilmour
	how did cystic fibrosis get its name?

Question:

130	Date: 2006-12-10 Time: 11:16:20	Name: maia diaz
	a couple are both carriers of the genes for cystic fibrosis have two children who are cystic fibrosis.what is the probability that their next child will have cystic fibrosis?

Question:

129	Date: 2006-12-08 Time: 02:06:45	Name: Anon
	could you tell me the scientific explanation for cystic fibrosis

Question:

128	Date: 2006-12-08 Time: 08:30:40	Name: Anon
	when does cystic fibrosis occur

Question:

127	Date: 2006-12-07 Time: 06:08:36	Name: Judy
	How did cystic fibrosis get its name?

Question:

126	Date: 2006-12-02 Time: 22:18:31	Name: Anon
	my 7 year old girl has been ill since a baby poor wight gain 16.7 kg at present time she was wrongly diagnosed with coeliac disease age 18 months and was on a gluten free diet for 2 yrs. didnt gain wieght so doc did 2nd byopsy which confirmed she didnt have coeliac. she has had alot chest infections and has been hospitalised 3 times.she has had 1 sweat test that was ok.she has always got a flemy sounding chest and takes inhalers regualy. her hight is fine but she hasnt gained any weight 4 1year

Question:

125	Date: 2006-11-30 Time: 12:30:06	Name: Anon
	What is CF and how does it affect the bearer

Question:

124	Date: 2006-11-30 Time: 12:27:03	Name: anon
	what is CF and what does it cause

Question:

123	Date: 2006-11-30 Time: 07:32:33	Name: Leah
	Why is everyone so negative about this disease? I'm 15 years old and handle this much better than half the adults with it. I feel that optimism is a key factor in staying well. Don't you?

Question:

122	Date: 2006-11-29 Time: 00:35:59	Name: Jessica
	What specific mutation is on chromosome 7 when you have cystic fibrosis

Question:

121	Date: 2006-11-29 Time: 14:03:50	Name: Brian
	what is the disease

Question:

120	Date: 2006-11-27 Time: 04:57:46	Name: kelsey
	what is the avergae age for someone with cf to pass?

Question:

119	Date: 2006-11-25 Time: 04:37:29	Name: Anon
	what are two hospital that help treat cystic fibrosis

Answer:

Date: 2006-06-22 Time: 21:24:35

Name: Sholto

Cystic fibrosis is the most common life-limiting autosomal recessive disease among people of European heritage. In the United States, approximately 30,000 individuals have CF; most are diagnosed by six months of age. Canada has approximately 3,000 citizens with CF. Approximately 1 in every 25 people of European descent and 1 in every 29 people of Ashkenazi Jewish descent is a carrier of a cystic fibrosis mutation. Although CF is less common in these groups, approximately 1 in every 46 Hispanics, 1 in every 65 African Americans and 1 in every 90 Asian Americans carry at least one abnormal CF gene.

Question:

118	Date: 2006-11-25 Time: 05:24:14	Name: Anon
	what is cf

Answer:

Date: 2006-06-22 Time: 21:25:29	Name: Emily
The questions are answered by volunteers who are fellow pwcf and occasionally there is a delay in posting an answer, frequently due to ill health. We hope that we have answered your question to your satisfaction and apologise for the delay.

Question:

117	Date: 2006-11-14 Time: 02:33:59	Name: Confused
	I am doing a school project about genetic disorders and i chose Cystic Fibrosis. I was wondering if somebody out there could help me. 1. How did it get its name? 2. Who does it effect (race)? 3. How common is Cystic Fibrosis? 4. Is there a cure or any treatments? 5. How does it effect daily lives? Last but not least Do you know any support groups for someone affected by the disease?

Answer:

Date: 2006-06-22 Time: 21:23:19	Name: Emily
*We hope that we have answered your question to your satisfaction and apologise for the delay.*

Question:

116	Date: 2006-11-13 Time: 21:20:59	Name: Anon
	How did Cystic Fibrosis get its name?

Answer:

Date: 2006-06-22 Time: 21:22:44	Name: Sholto
*Yes, there are mild forms of cystic fibrosis and in these cases the disease may not be detected until adulthood.*

Question:

115	Date: 2006-11-12 Time: 04:58:11	Name: cm
	what are the uncommon medications used to treat Cystic Fibrosis?

Answer:

Date: 2006-06-22 Time: 21:21:49	Name: Emily
*Yes. The questions are answered by volunteers who are fellow pwcf and occasionally there is a delay in posting an answer, frequently due to ill health.*

Question:

114	Date: 2006-11-12 Time: 04:02:33	Name: Kelly
	Why are there high chloride levels in your system when you have cystic fibrosis? I've been looking for this answer everywhere, maybe you guys can help me out!!

Answer:

Date: 2006-06-22 Time: 21:20:35

Name: Sholto

Cystic fibrosis is a genetic disorder; this means that in order to develop cystic fibrosis you need to inherit two cystic fibrosis genes, one from each parent. If you have cystic fibrosis, particular pair of genes (on chromosome 7) do not work properly. This pair of genes helps to control the way the cells handle sodium and chloride ions ('salt'). There are many different abnormalities (mutations) of the 'cystic fibrosis gene', but, basically, they all stop the cell from handling sodium and chloride properly. As a result, cells in affected organs have a fault in the way sodium and chloride travel in and out of the cells. Basically, too much sodium travels into the cells. Water follows the sodium which leaves too little water outside the cells. This causes the mucus or watery secretions outside the cells to be too thick (for example, in the airways of the lungs).

Question:

113	Date: 2006-11-08 Time: 22:24:48	Name: Anon
	Can a person who has never had CF symptoms be diagnosed with CF as an adult -- and at a later age?

Answer:

Date: 2006-06-22 Time: 21:19:54

Name: Sholto

Researchers are developing innovative gene delivery systems -- or vectors -- to determine the best way to deposit healthy genes into the airways of people with CF. These "healthy" genes are manufactured in a laboratory using state-of-the-art biotechnology. Modified viruses that target the airways and compacted DNA are among the vectors being refined for potential gene transfer. CF scientists are hopeful that some of the same technology being developed for gene therapy to treat airway cells will eventually be adapted to treat other organs affected by CF, such as the pancreas. The first gene therapy experiments involve airway cells because these cells are readily accessible and because lung damage due to CF is the most common life-threatening problem. Any CF gene therapy treatment that is developed may need to be repeated periodically to be effective.

Question:

112	Date: 2006-11-08 Time: 22:22:29	Name: Anon
	Is CF ever diagnosed for the first time in an adult?

Answer:

Date: 2006-06-22 Time: 21:18:49	Name: Sholto
We�ve looked into this question and are unsure of the answer. However, people with CF generally are vulnerable to liver disease and cirrhosis so we would suggest that you take it easy with your alcohol consumption!

Question:

111	Date: 2006-11-08 Time: 21:11:04	Name: Sian Maymond
	If a child who suffers from cystic fibrosis' mother wished to have more children but was worried about them having an increased risk of developing cystic fibrosis. What would a consultant advise?

Answer:

Date: 2006-06-22 Time: 21:17:35	Name: Sholto
Gene therapy offers great promise for life-saving treatment for CF patients since it targets the cause of CF as well as the symptoms. While a cure for CF remains some way off, doctors and scientists around the world are working to find ways of repairing or replacing the faulty gene and clinical trials are due to start in the next few years.

Question:

110	Date: 2006-11-08 Time: 18:43:40	Name: darren
	how can people test for cystic fribosis in a unborn baby

Question:

109	Date: 2006-11-06 Time: 22:42:35	Name: on behalf of my friend
	My friend is thinking about trying for another child but her first child was born with Cystic fibrosis what should she be advised to do?

Question:

108	Date: 2006-11-06 Time: 20:18:43	Name: Anon
	Hi, as a carrier of cf, as there been any studies that a carrier can have any signs of cf?

Answer:

Date: 2006-06-22 Time: 21:38:07

Name: Emily

As discussed in the response to your previous question there is a danger that both smoking and drug use will impact on your brothers' health. Lung damage is progressive and the best way that a pwcf can help themselves is to do everything to slow the lung damage down, such as keep to their medication routine and do exercise. Perhaps your brothers would benefit from speaking to their team about the potential risks they are facing and maybe to other pwcf who might be able to empathise and support them. There are message boards available for people with Cystic Fibrosis and those touched by it at http://www.cftrust.org.uk/jive3/index.jspa?categoryID=1.

Question:

107	Date: 2006-11-06 Time: 18:51:59	Name: Anon
	WHAT IS PSUDEMONAS

Answer:

Date: 2006-06-22 Time: 21:32:39

Name: Emily

Studies on passive smoking and CF all show a small but �significant� affect on lung function and need for IVs. Actually smoking would increase these affects. Many of the general passive smoking studies mention the impact of smoke on cystic fibrosis as a significant finding in their studies, and there is a known impact on rate of decline. Effects mentioned including more frequent IVs, longer courses of IV antibiotics, and a measurable decline in both FVC and FEV1 per number of cigarettes smoked in the household per day. Drug use can bring with it all kinds of complications risks and side effects. An additional risk for pwcf could be interaction with prescribed drugs not to mention increase of lung damage if the drugs are inhaled. Cystic Fibrosis does not increase the risk of lung cancer as far as we can find.

Question:

106	Date: 2006-10-23 Time: 00:41:45	Name: Meagan
	Im 18 and have cystic fibrosis and psudemonas. Now i have read many things about psudmemonas and my biggest problem is everything tells me something diffrent. Is it serious ? Is it something to stress over? What do i really need to know?

Question:

105	Date: 2006-10-13 Time: 20:15:41	Name: katie hibbert
	i have asked my class teacher this in phse and have not had a reply but i am worried that my cousin is not shareing her feelings about having her lung transplant and want to know how she feels. My main question is what is a lung transplant and how does it work?

Question:

104	Date: 2006-10-07 Time: 18:45:16	Name: donna
	why does cystic fibrosis happen

Question:

103	Date: 2006-10-05 Time: 17:25:31	Name: katie hibbert.
	How can I offer support to my cousin who has cystic fibrosis. She is 19 and I am 11 but I do understand what the disease is and want to help her to cope.

Answer:

Date: 2006-06-17 Time: 13:47:23

Name: Sholto

While references to cystic fibrosis symptoms can be found as far back as the 1600s, the term �cystic fibrosis� can be traced to early publications of the condition by Fanconi and colleagues in 1936 who described two children with �cystic pancreas fibromatosis and bronchiectasis�. The first comprehensive description of the disease came in 1938, when Anderson reported 49 patients with �cystic fibrosis of the pancreas� and Blackfan and May described 35 patients with cystic fibrosis.

Question:

102	Date: 2006-10-05 Time: 13:48:08	Name: Ronni
	How long can a person who has cystic fibrosis live if they smoke and dont quit?

Question:

101	Date: 2006-10-02 Time: 02:01:48	Name: Anon
	how did Cystic Fibrosis get its name?

Question:

100	Date: 2006-10-02 Time: 20:41:32	Name: Anon
	How did cystic fibrosis get its name?

Question:

99	Date: 2006-09-21 Time: 14:27:10	Name: x x x
	I like James xxxx

Question:

98	Date: 2006-09-21 Time: 14:24:39	Name: Liz
	if youu have the gene cyctic fibrosis do you have cystic fibrosis?

Answer:

Date: 2006-06-17 Time: 13:47:40

Name: Sholto

Question:

97	Date: 2006-09-19 Time: 11:47:21	Name: Elaine
	I am 19 week pregnate, My doctor just told me that I have Cystic Fibrosis, all she gave me was a pamplett. After reading online information, I think it is safe to assume I am not a carrier but have the diease. What does this mean for my unborn child? Could I not live to raise my child, should I start thinking about the future for him or her? I am very confused. Should I go to another doctor for another test. To see how far along it has progressed?

Question:

90	Date: 2006-04-12 Time: 00:25:36	Name: nancy
	what is cystic fibrosis

Answer:

Date: 2006-06-16 Time: 14:13:13

Name: Sholto

Cystic fibrosis is a serious inherited disease which mainly affects the lungs and pancreas, but can involve other organs. Symptoms usually begin in early childhood and include persistent cough, wheeze, repeated chest infections, malabsorption of food, and general ill health. Treatments include antibiotics, physiotherapy, mucus thinning drugs, pancreatic enzyme replacements and other therapies. At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it.

Question:

89	Date: 2006-04-11 Time: 19:28:27	Name: anthony bartolucci
	who discovered cystic fibrosis

Answer:

Date: 2006-06-16 Time: 14:14:02

Name: Sholto

There is not any one person who �discovered� cystic fibrosis (CF). Wives tales and fables from as far back as the 1600s report that children that taste salty when kissed on the brow were hexed, salty tasting children were bewitched, which may reflect an early references to CF. Case reports from the 1800s through the early 1900s describe infants with meconium ileus, sometimes with pancreatic changes at autopsy. By 1900, children with pancreatic insufficiency were recognized to have features consistent with CF, and some of these children had associated lung disease. The first publication on CF is usually attributed to Fanconi and colleagues in 1936. This manuscript, in German, describes two children with �cystic pancreas fibromatosis and bronchiectasis�. The first comprehensive description of the disease came in 1938, when Anderson reported 49 patients with �cystic fibrosis of the pancreas� and Blackfan and May described 35 patients with CF. Most authors by this time began to recognize a familial inheritance pattern. Anderson and Hodges proposed an autosomal recessive pattern of inheritance in CF in 1946. It was Paul di Sant�Agnese, in 1953, who first described the abnormalities in sweat electrolytes, which provided the basis for sweat testing, the primary diagnostic test for CF today.

Question:

88	Date: 2006-04-11 Time: 18:43:24	Name: jena
	what is the life expectancy for cystic fibrosis?

Answer:

Date: 2006-06-16 Time: 14:16:42	Name: Sholto
*The average life expectancy for someone with CF is around 31 years.*

Question:

87	Date: 2006-04-10 Time: 18:36:59	Name: Anon
	i was misdiagnosed with cf after 7 years and was wonderin if there are side effects from using nutrizym/creon tablets

Answer:

Date: 2006-06-16 Time: 14:17:48

Name: Sholto

Medicines and their possible side effects can affect individual people in different ways. Most drugs have known possible side effects and just because a side effect is known to exist does not mean that all people using this medicine will experience that or any other side effect. The following are some of the side effects that are known to be associated with this nutrizym / creon: vomiting, nausea, irritation to the lining or movements of the gut, irritation of the area around the anus, high amount of uric acid in the blood and urine. If you are worried that you have experienced side effects from any medication you have taken, you should discuss your concerns with your medical practitioner.

Question:

86	Date: 2006-04-07 Time: 11:17:01	Name: sonia
	I have been told I have atypical CF because I have chronic psudemonas, staph , proven malabsorptioin, etc. However, I was told that I have this atypical label at the CF clinic, because my sweat test is normal, but my body isnt ! I would like to know how to cope with the feeling of being a "cfer" but also not being the typical case. ? I have usual admissions about two or three times a year, and I do feel very different from people my age. I am 28, 5"7 and 55kg.

Answer:

Date: 2006-06-16 Time: 14:18:30

Name: Sholto

Some mutations of the cystic fibrosis gene are associated with borderline sweat test results and rarely the sweat test can be normal in a person with cystic fibrosis. While people with cystic fibrosis may be termed typical or atypical, depending on their clinical presentations, these distinctions may mean little to the individual with the condition. Online communities, such as this, have a diverse range of members which will most likely include people who have a diagnosis of atypical cystic fibrosis. Sharing your experiences with others online may help you to cope with your condition and will certainly benefit others who may be seeking information or advice in relation to their own health or that of their child, other relative, or a friend.

Question:

85	Date: 2006-04-03 Time: 17:50:19	Name: Anon
	how did cystic fribosis get its name, how long did people know about the disease, what causes the disease, what are the early symptoms of th e disease,

Answer:

Date: 2006-06-17 Time: 13:43:56

Name: Sholto

Cystic fibrosis is a genetic disorder that occurs when you inherit two cystic fibrosis genes, one from each parent. These genes, which help to control the way the cells handle sodium and chloride ions ('salt'), do not work properly. As a result, the mucus inside the body (for example, in the airways of the lungs) is too thick. The symptoms of cystic fibrosis include having a troublesome cough, repeated chest infections, salty seat, poor weight gain, and abnormal stools. While references to cystic fibrosis symptoms can be found as far back as the 1600s, the term �cystic fibrosis� can be traced to early publications of the condition by Fanconi and colleagues in 1936 who described two children with �cystic pancreas fibromatosis and bronchiectasis�. The first comprehensive description of the disease came in 1938, when Anderson reported 49 patients with �cystic fibrosis of the pancreas� and Blackfan and May described 35 patients with cystic fibrosis.

Question:

84	Date: 2006-04-03 Time: 17:47:50	Name: Anon
	how did cystic fribosis get its name

Answer:

Date: 2006-06-17 Time: 13:44:41

Name: Sholto

Question:

83	Date: 2006-04-01 Time: 20:20:03	Name: Anon
	how did cystic fibrosis get its name

Answer:

Date: 2006-06-17 Time: 13:44:56

Name: Sholto

Question:

82	Date: 2006-03-31 Time: 11:39:13	Name: ayanda
	what happening if pancrease stop functioning properly

Answer:

Date: 2006-06-17 Time: 13:45:39

Name: Sholto

The pancreas normally makes digestive juices which contain chemicals (enzymes). The digestive juices normally flow out from the pancreatic duct into the duodenum and digest food. In people with cystic fibrosis, thickened secretions block the normal flow of the digestive juices from the pancreas. This can result in food not being digested or absorbed properly, in particular, fatty foods and fat-soluble vitamins (vitamins A, D, E and K). This can cause malnutrition, problems with greasy stools (motions), and a bloated abdomen. Treatment for pancreatic problems includes eating a high fat and carbohydrate diet and taking enzyme supplements to help to digest food.

Question:

81	Date: 2006-03-25 Time: 02:15:22	Name: Anon
	My question concerns copd. I have been told that my breathing capacity is in the 50% range. Does this present a disability under social security guidline?

Answer:

Date: 2006-06-17 Time: 13:46:31

Name: Sholto

Chronic Obstructive Pulmonary Disease (COPD), which encompasses both chronic bronchitis and emphysema, is one of the commonest respiratory conditions of adults in the developed world. Cigarette smoking is the most common irritant that causes COPD. Breathing in other fumes and dusts over a long period of time may also cause COPD and very rarely cystic fibrosis has been identified as a contributing factor. Advice on qualifying for social security benefits is outside the remit of this page, looking at this page http://www.dwp.gov.uk/lifeevent/discare/ may help you further. An individual should make the decision about whether or not to apply for social security disability benefits based upon their own beliefs about their situation, breathing capacity being just one of the factors.

Question:

80	Date: 2006-03-24 Time: 19:14:45	Name: Demetrius Morris
	How did cystic Fibrosis get its name?

Answer:

Date: 2006-06-17 Time: 13:49:11

Name: Sholto

Question:

79	Date: 2006-03-24 Time: 19:12:07	Name: Demetrius Morris
	how did cyctic fibrosis get its name?

Answer:

Date: 2006-06-17 Time: 13:49:25

Name: Sholto

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