Can someone explain to me how can one disease like cystic fibrosis affect so many different organs in the body? My friend suffers from it and she has problems with both lungs that causes breathing problems, coughing and mucus and pancreas. How are these two organs connected, so that both can be affected in one disease?
View 1 RepliesI need to know something about cystic fibrosis causes. I am 34 years old, my wife is 29, and she gave birth to our baby girl 3 days ago. Out happiness and joy subdued very fast, when doctors mentioned that she might be suffering from cystic fibrosis. I want to know how did this happen? Is it our fault? We did all we could; pregnancy was not an easy one, but it all ended ok. What is this now?
View 3 RepliesI'm married and my husband has (cf) and i know that women can have (cf) and still get pregnant but can a man with (cf) have children? we want to have a babe but are afraid that it isn't possible.
View 1 RepliesAre there any cystic fibrosis patients here? I would like to speak with someone who has this illness, so that I would know what would await my baby if I decide to keep it. I know that this might sound cruel, but I do not want my child to suffer and have life far from normal and healthy. Please, doctors said that it can be kept under control, but that answer is not good enough for me. I need more.
View 6 RepliesMy sister has atypical cystic fibrosis. When I have heard about her illness for the first time I did not know what it is. Then I have started to look for the atypical cystic fibrosis in the literature. Now I know what cystic fibrosis is, but I don't know anything about atypical kind of it. Can you help me with this?
View 2 RepliesI heard from my friend about cystic fibrosis as severe genetic disease and my other friend has child who is suffering from it. As I intend to become mother next year I would like to know is there any way to prevent this disease. In deed main reason why I am asking this is my husband who told me that his younger brother had died as baby from cystic fibrosis but he is not totally sure about it.
View 1 RepliesI was diagnosed with cystic fibrosis when I was just a little girl. I have been on medication and a special dietary regime all my life. Now the doctors say that I have developed cystic fibrosis related diabetes and that I will have to take additional medicine. You can imagine how delighted I was when I heard this. I am a twenty five year old, but I feel like I am fifty. I would like to avoid any new injections and drugs because the therapy I am under is already too demanding. Is there some other way for me to treat this cystic fibrosis related diabetes?
View 1 RepliesI need some info about cystic fibrosis and inheritance-do you think my child one day could inherit cystic fibrosis for I am a carrier but I never had any complications cystic fibrosis related? So do you think I should be worry over this for I would like to stay pregnant pretty soon and now am pretty much concerned over this cystic fibrosis and inheritance issue?
View 1 RepliesWhile I was in hospital waiting for my baby to be born, I heard a lot of stories about various things that could go wrong with both babies and their mothers. One of those was about cystic fibrosis and lungs. I mean how lungs are affected by this illness and things like that. I was very shook up. I mean this cystic fibrosis is just one of so many potential diseases. Thank God I had a safe delivery, and there is nothing wrong with my baby.
View 1 RepliesOur 10 days old grandson was finally diagnosed with cystic fibrosis. I said finally, because it took doctors 6 days to determine the cause of baby's problems. They said that there is a possibility that one or both parents are illness carrier. Is that even possible? Can you be cystic fibrosis carrier and not know it through your entire life?
View 4 RepliesI would like to ask a question concerning cystic fibrosis diet. I work as a nurse in a hospital, and I heard for a lot of cystic fibrosis cases in last 6 months. Of course, the affected are all newborn, and I am just curious about their fates. I do not want to ask doctors, they all seem jumpy and nervous when you ask them anything about their little patients. So, will there be any help from you?
View 1 RepliesIs there a cystic fibrosis gene? Is it possible that I am guilty for my baby's disease? I gave birth to my son less than 2 days ago and already they found that something is wrong with him. They talked of inherited cystic fibrosis which, I know at least that, means that either one or both parents are responsible.
View 1 RepliesCan you tell me something about cystic fibrosis carriers for I am planning on getting pregnant but I am afraid that my baby could be born with cystic fibrosis for my mum has the illness and I know it is inherited and I know I am cystic fibrosis carrier. So do you think I should get pregnant with this cystic fibrosis carriers history and how could this possibly affect my baby health condition?
View 2 RepliesDo you think me and my husband should have some cystic fibrosis tests for I know I have this defective gene in my family history or precisely my mum has died from cystic fibrosis and I probably am a cystic fibrosis carrier. Anyway I am planning on getting pregnant and would like to hear would some cystic fibrosis tests help me with this decision for I won't like my kid have the same diagnose when it is born?
View 1 RepliesI am 16 years old girl. I attend medical school and I really need one answer fast. Can you tell me which chromosome is affected by cystic fibrosis? I have a test tomorrow and I can't seem to remember this fact. Please help me out; it will be a lifesaver. Thank you in advance.
View 1 RepliesI`m pregnant and the problem occurred when I found out that I got cystic fibrosis. I know it`s a genetic disease. I fear for my baby. Is there anybody with experience who could tell me something about that? How is CF inherited?
View 1 RepliesI am a twenty five years old pregnant woman. I found out that I am pregnant only few days ago. But now there is a problem. I have cystic fibrosis. This concerns me very much. I heard that women with this kind of illness have small chances for a long life after giving birth. Is this true? Also I am very worried about my baby. Will there be any problems with it?
View 1 RepliesI was told I had cyst in my ovaries before, but I received a shot that made the bleeding and blood clots stop and I was getting regular periods.
Now I haven't gotten a period for almost 2 months now and I'm starting to bleed again like before. Should I be worried that the cysts may have came back? What is my best option?
My husband was diagnosed with iron overload and had the DNA testing done for Hemochromatosis, he has been waiting 7 months now and was told it would be another 4 months til he sees a Dr. to discuss the situation. My question is with waiting this long and not knowing how long before that he had high iron, will this be affecting his organs in a detrimental way.
View 1 RepliesMy partner was diagnosed with IPF in June 2015 when he had terrible breathlessness, horrendous coughing and had lost a stone in weight. For the previous 9 months he was told he had Bronchiectasis. He is now 74 and was always a very fit man working as a part time gardener and going to the gym weight training and running until April 2015 when the breathlessness stopped him. He was referred for a CT scan and an appointment with a consultant. 5 weeks later he had the scan and 6 weeks later saw the consultant. By this time he struggled to walk farther than 20 yards. The consultant arranged for various tests to be done and said he would see him in 6 weeks. He would not give him any medication.Once the tests were done my partner was feeling very ill so I requested an earlier appointment with the consultant, he then required further tests based on the reults of the first ones and would see him in 6 weeks.Time is now marching on and he is quite ill and then he was told to go into hospital overnight as they thought he had a collapsed lung, which he didn't and he was then referred to a specialist and the appointment was 6 weeks later. At this appointment he was put on home oxygen and pirfenidone. 2 months later he had an appointment with the consultant who then said he would see him in 3 months.He has now lost 3 stone in weight, has no appetite and says food tastes like cardboard.We have not been given any support or contact for when things get worse. The pirfenidone does not appear to have made any difference and he is now on oxygen 24/7 and struggles to walk to the cloakroom - about 18 feet. Nobody told us anything about the disease, what to expect etc. At Pulmonary rehab he learned home exercises which was good and I mentioned to the nurse that nobody had explained the disease to us and she gave me a booklet from the BLF to read, something we could have found on the internet.
Last Sept/Oct my partners brother was told he probably had IPF and we told him to keep pushing for appointments in order to get Pirfenidone and not hang about for 6 months like we had to. In January he was referred to a specialist and in early March he was assessed for oxygen. This morning sadly he passed away without seeing the specialist and still not having oxygen.
Why does everything take so long. If you are diagnosed with lung cancer you are usually being treated within about 6 weeks not 6 months.
My partner insisted on being referred for a lung transplant as he saw a story on the BLF site of a man of 71 with IPF, always been very fit and healthy was given lungs and is still going strong.When we went to the specialist hospital it was all negative, too old and no tests were done and they even denied that the op on the 71 year old was carried out in their hospital. When we got home I emailed the story to them but they did not reply.
Everyone should have a chance of life.
I went to a dermatologist today and i was told my face had a good deal of acne. I have my acne or my forehead and a lot around my jawline area that are cystlike. I have a few of them and those are cystic pimples. The dermatologist recommended me to do acne surgery ... extraction she mentioned and i kinda did not want to do this b/c i had a bad experience with a an esthetician many years ago plucking my face. The difference was that was in a salon and not a dermatologist. I remembered when i did it, i had holes and my acne was really bad right after it so I said I didn't want to do it.
However i asked if i could get cortisone shots done in my jawline where i have cystic pimples that doesn't seem to go away. Dermatologist did the cortisone injections and it was not painful at all. There were 3 of them done when i checked by bill. Anyways i came back home and then i saw i still had the cystic pimples there... I made the mistake of actually thinking these shots destroyed the cystic pimple on the spot... found out recently it takes a few days or close to 1 week for it to flatten.
Well I got prescribed epiduo for my acne and also solodyn as an antibiotic. I'm told to follow the same regimen i have but use epiduo at night and take solodyn once a day.
My question is should i even start the epiduo cream now after i got the cortisone injections? Should i wait a few days first till it flattens a bit and then use it? I'm worried using it might make it worst. I called the office and one of the reps there said it didn't matter you could start now but im thinking i shouldn't use this product on the area of my face yet right after the injections? Should i put anything on these spots where i got the injections? Because im thinking all i should do is wash my face like normal and put aloe vera gel on it or nothing at all and don't put any acne cream on it till few days later?
How long did it take for the cystic pimple to get smaller after the injection? Does it flatten fully or does it not? How soon can you do it again on the same spot if it didn't work? I assume if it doesn't flatten in 1 week, then it didn't work? I read online that ppl mention 2-3 days it should flatten and the cystic pimple should be gone...