FAQ - Lymphangioma, Cystic
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Any good acne treatments for cystic acne and scarring?


Does anyone know of any good acne products/perscriptions for cystic acne and scarring? I'm currently using Glytone, which helps clear up but I'm tired of wearing make-up to the gym which I shouldn't even do but it's better than wearing no make-up.
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Cystic acne is treatable with Accutane. Unfortunately it comes with a booklet that you (and your parents, if you're a minor) have to go over carefully, due to side effects (which are many). But I have seen it work wonderfully on most patient. Only dermatologists can prescribe it so you may need to get a referral from your primary care physician to see one.

It is more troublesome for female patients as she must go on birth control pills (regardless if she is sexually active or not), and if she's sexually active, her partner must use condom. She also has to get pregnancy test every month, along with other lab works (Liver function test, CBC, complete blood count, and lipids).

For boys, we don't have to do pregnancy test obviously.

It's not to be taken lightly, but when it works, it really works. Do discuss it with your doctor, please, about the pro and con of this medication (there are generic versions now--a bit cheaper). Never never try your friend's or get it in the black market.  (+ info)

How close can one with Cystic Fibrosis be to living a "normal" life?


On a scale of 1-10 (10 being closest to "normal" living), where does one with CF fall? How does it affect things emotionally? Financially?
I am doing a project on Cystic Fibrosis, and some (well most) sources are too general in explaining how life really is.
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It really varies with the person.

My boyfriend is very fortunate-- he has a mild case. At 19, he's only had to have sinus-clearing surgery twice (three times? I can't remember), and is expected to live well past the 37-year median age of survival. There are many people that don't ever make it to adulthood.

Most CF patients are at a nine. They take pills with every meal (pancreatic lipase, the number of pills is determined by weight of the person), which is more problematic for kids than for adults (for small children, the enzyme pills are mixed with applesauce or ketchup). Every other month, my boyfriend has a tobi-abuterol treatment he does twice a day (it's an antibiotic and a bronchidilator, respectively). Women can still have children (men are generally sterile). CF patients can still play sports (sports and choir are actually encouraged, because of the lung exercise) and do everything else that others do. They can eat as much as they want, because they're still going to be skinny. They lead normal lives.

What it takes to make them healthy: Exercise is the single most important thing. Adequate nutrition is the other--sure, they can eat all they want, but since they're bodies are absorbing less, they need to eat more nutritionally-dense foods. CF patients are more prone to infection, and thus it is more important to stay active and healthy in the winter months, when infection is more prevalent in the general population

Finances are very hard. Insurance policies generally cover generic and brand name prescriptions, but what about "rare" ones? almost all CF prescriptions (Tobi, Creon-5, Abuterol) fall under that category. Insurance plans that require you to go to netwok doctors can be very frustrating--at my boyfriend's last doctor appointment, we walked in of his doctor pulling up the Cystic Fibrosis Wikipedia page. We've been dating for several years, but have yet to get married because we can't afford the health insurance (which is now covered by his mom's work policy).

Emotionally, it's hard on the family--CF awareness is very low, and it's very hard to know that the love of your life will die before you have a 30 or 40 year anniversary with them. There are no drugs that have been tested and deemed safe for elderly CF patients, because there are not enough elderly CF patients to test them on. It's hard for the CF patient to know that they have a shorter life, but not to really know how short that life may be. To be a CF patient, or to be close to one, is emotionally painful. Knowing you're going to die, or that the love of your life is going to die, HURTS.

I know it sounds silly, but thank you so much for doing this project. Thank you SO much. CF awareness is ridiculously low.  (+ info)

Cystic fibrous-how do you get a child to swallow the Enzymes?


I have a 2 1/2 yr old granddaugther with cystic fibrous--that will not eat her food now because she knows the enzymes have been added to them--doctors say she needs to be swallowing the capsules whole by now---have tried giving her the capsules with a spoon full of applesauce but she throws them up--any suggestions?
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Good afternoon. I'm a 39 year old CF'er that has been on enzymes since I was diagnosed at one year old.

I started swallowing the enzyme capsules at age 4. Prior to that my mom would put the powder (the enzyme contents have changed over the years) into either ice cream or applesauce. I don't ever recall throwing up, but I do remember not liking to take them in ice cream since it melted as soon as the enzymes touched it so it was rather gross - not to mention the bitter taste mixed with the ice cream.

One of the things my CF friends used to do was put the enzyme contents in honey and swallow that. You could probably try putting the whole capsule toward the back of her mouth and then have her swallow a spoon of honey to "wash" it down. You could try other foods that don't really require chewing such as the jam or pudding that others mentioned. If you want to try having her swallow the enzymes in a "normal" fashion, try having her use a straw with whatever she drinks - for some reason it makes it easier to get the right amount of liquid, not to mention being more fun for someone that age.

Trying to swallow the pills may be scary for your granddaugher but if she understands that it will prevent her from having to take the pills in other manners she may be more willing to try. Be sure she starts out only taking one at a time, rather than multiples in one swallow (regardless of the approach). If she's not willing then don't force it...just try to find something more appealing for now and then try later when she's more receptive.

Best wishes.  (+ info)

Is it normal to have a cystic pimple for this long?


I've had a cystic pimple on my left cheek for I would say about 5 months. Is this normal? I've had a habit of picking the scab on it and I know it'll cause scarring but could this be the reason it won't go away? Also, is there any way I can get rid of it or help get rid of it without buying medicine or anything?
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True cysts have a habit of staying around a long time. Get a shot of cortisone and it will dissolve it.  (+ info)

Is there a way to help doctors find a cure for cystic fibrosis faster?


My little cousin has CF and its horrible to see her suffering from it at such a small age. So I was wondering is there a way to help them find a cure for cystic fibrosis faster? And how much more longer will it take doctors to find a cure for CF patients?
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Well an actual cure will always take longer, because genetics is involved and it is not just a one fix cure all because many parts of the body are affected. Probably quicker than a cure will be more drugs to combat infections, and to maybe correct some of the issues with CF. I have CF and every year most of my extended family donate to the Cystic Fibrosis Foundation, which is good. Even if it is $5 it is something for research!  (+ info)

Is it good to use steam rooms and saunas when you have Cystic Fibrosis?


I joined a health club that has these steam rooms and saunas and I have Cystic Fibrosis, I was just wondering if they're good to use with my condition and for how long at a time? I'm 15
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I wouldnt do it...its kind of like how ppl w/CF aren't supposed to go in hot tubs either. The hot,wet steam grows bacteria that grow well in hot, wet places like the lungs, so the kinds of bacteria in there (like pseudomonas) aren't good to be around.  (+ info)

How long does it take to get Cystic Fibrosis tests back?


I am pregnant and was tested for cystic fibrosis along with a million other things on the 30th of August. I was back at the doctor a week later on the 6th of August, and the doctor said my results all came back normal but the down syndrom and cystic fibrosis tests had not come back yet. On the 6th I had my pap smear and pelvic exam and yesterday on the 15th got a letter in the mail saying that my pap smear, urine, and blood tests, and quad screen all came back normal, but the box for cystic fibrosis was not checked, I'm wondering if that means I am a carrier of the disease or if it means they haven't gotten the results in yet. I'm going to call my doctor in the morning, but I'm really worried. Does anyone know how long it takes to get the results back from that test?
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I had this done back in August and it only took two weeks so it looks like someone's either asleep at the wheel and not paying attention to what info you're getting or there is some hold up. Next time you're in you should ask about it but if it came back that you were positive then I would imagine that they would have called you so your partner could be checked as well. Best of luck!  (+ info)

How do you get rid of one cystic acne bump?


I have a cystic acne bump on my nose and i have had it for a week, what should i do?
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Cystic acne,also known as nodulocystic acne,is a severe type of acne vulgar is.Main symptom of cystic acne is deep breakouts with severe inflammation all over the body including face.These blemishes can grow large than normal acne.  (+ info)

Can you develop cystic fibrosis as a teenager?


All the reading I've done on cystic fibrosis says it is a genetic disease. However, I have a lot of the symptoms of it and was wondering if it could become evident later in life? Thanks.
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It is a genetic disease, my daughter was almost nine years old at diagnosis and she had very little signs of the disease. I know several people that have been diagnosed in their 30s, 40s and recently met a nurse that was diagnosed at almost 50. It is not a one size fits all disease, it presents very different from patient to patient, even from siblings that have the same mutations. Unfortunately, the older the patient gets the more marked the disease, it is afterall a progressive illness. On the other hand those of us that are carriers may present many signs of the disease. I am a carrier and I have horrible gi(gastro-intestinal) issues, lung issues since a very early age, etc. There are other diseases that mimic CF one is Ciliac disease,

Good luck,
Anna mom of a patient with CF  (+ info)

How old is or was the longest living cystic fibrosis patient?


How old is or was the longest living cystic fibrosis patient?
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