Topics

Acapella
Should any other forms of respiratory rehabilitation be done while using Acapella?
09.05.2011
Genetics (2143delT/delF508)
Hello, in my son F508 del and 2143 delT mutations were detected. As far as the first mutation is concerned, one can find some information about it in the internet. The second mutation is not known to me. Please, provide me with any information about this one. I know, that few people have this mutation, even my doctor (with 30-year-experience) in outpatient dept. hasn't seen such case so far. Greetings, looking forward to your answer.
09.05.2011
Splicing mutation
Hello Are they any studies underway for splicing mutations? If yes, what are they? Thank you for your answer.
05.05.2011
Anorexia?
My 14-year-old son has cystic fibrosis. For the last three weeks, after a gastroenteritis, he has been refusing to eat, suffering from recurring stomach aches, and he vomits if forced to eat. His weight is 47 kg for 1.72 m. His doctors consider a psychological factor as the most likely hypothesis (and he is under a child psychiatrist’s care): However, I’m still strongly worried by the stomach aches and the vomiting. Could this have something to do with anorexia? Or something else? Thank you for your help. I am really distraught by him being so skinny and refusing to eat.
05.05.2011
Staphylococcal infection we are treating is chronic?
Thank you for a very useful Q&A! My seven-year-old complains with knee and leg pain and that she suddenly feels she cannot walk. She has CF. We do not listen to carefully, but then, I found this on the web (e-corn-cf.eu): CF-arthropathy 2) Episodic (acute) arthritis Hereby it deals in the first row with a typical so-called “CF-arthritis”. Hereby it deals in general with an acute illness. The joint problems occur asymmetrically and affect small or large joints. The complaints last mostly only for a limited time about 7-14 days. One assumes, that the reactions of the joints are caused by so-called immuno-reactions, which are based on the chronic bacterial inflammation of the lung. For making the diagnosis, only few things can be found. On the x-ray, swelling of the soft tissues or effusions can be seen. In the laboratory, negative results for the rheumatic factors occur, in single cases so-called immuno-complexes (ANCA) can be positive. As therapy, painkillers should be used. Of essential importance is an agressive antibiotic therapy. Question: are we given a clue that the staphylococcal infection we are treating is cronic? are we given a clue that the x-ray and ultrasound from the last yearly check-up really show bacterial infection? might this speed up how and that we treat this?
05.05.2011
Water softener
We have big problem with limestone. We wish to install a water softener in our house. Is there a problem with respect to Cystic fibrosis and P. aeruginosa ? If yes, are there any specific recommendations and technical choices better than others?
05.05.2011
Colchicin
Hello, I read an article (relatively old) that speaks of colchicine, an anti-cancer molecule which could have beneficial effects on CF. Could you please give me some news about this molecule?
05.05.2011
Lower limb pain
My daughter, is13 and has CF. She has a frequent pain that can be intense in the lower limbs. Patella syndrome was diagnosed. Physical therapy was prescribed. No improvement, she consulted a rheumatologist who confirmed the patella syndrome and diagnosed Osgood Schlatter's disease. She is soon to make a bone densitometry. Osgood Schlatter usually affects boys and / or athletes. My daughter does not play sports. I wonder if other patients with cystic fibrosis have the same symptoms, and if there may be a link. Best regards C.
03.05.2011
Wrinkling and painful skin of the hands after shower or bath
Hello, My son has always had very quickly fripent fingers, with strong tingling, pain and even cracks. His skin becomes white and granular and may even goes in powder if he rubs his hands. It's more or less pronounced according to times / periods. It makes me too, like almost everybody. We are not talking about the same rapidity of onset, nor of the same magnitude. You will find below two studies that describe it as a marginal phenomenon, nevertheless I personally think it is far more widespread than originally believed. The two key passages: "Ultimately, the CF should be suspected in patients with wrinkles aquagenic the palms of the hands, and patients with cystic fibrosis should be questioned about this symptom." "Similarly, diabetes, leprosy and Other Disorders Affecting The Nerves May Not Develop Skin wrinkles Because Of Their condition while Those With Cystic Fibrosis Have Been Shown to Develop Quicker Such wrinkling." First study: Aquagenic wrinkles of palms in patients with cystic fibrosis homozyogotes for the mutation delta F508 CFTR. Arch Dermatol, 2005, 141.5 :621-624. Katz KA, et al. Aquagenic wrinkles of palms are a rare phenomenon characterized by rapid and transient formation of white plaques, edema on the palms of the hands when in contact with water, and these changes may be asymptomatic or accompanied by feelings of itching or burning. Described for the first time in patients with cystic fibrosis, the phenomenon was first observed in women; specific mutations in the CFTR gene were not detected in these subjects. The article describes the cases of 2 patients homozygous for delta F508 mutation: - A boy of 17 years (male first case described), who presented wrinkles aquagenic for 3 years. - A 13 year old boy who presented this phenomenon for 6 months. Ultimately, the CF should be suspected in patients with wrinkles aquagenic the palms of the hands, and patients with cystic fibrosis should be questioned about this symptom. Although the etiology is unknown, the association with cystic fibrosis and inhibitors of cyclooxygenase-2 suggests that skin exposure to high concentrations of salt may play a role in its pathogenesis. Second study (At the very end of the text, it is mentioned that Mucos wrinkle faster in water): Why Does Skin Wrinkle in Water? Prontosan ® Wound Gel Ready to use gel for cleansing, moisturizing of Acute & Chronic Wound www.prontosan.co.uk Karicia by Aranel Natural Skin Care for your Effective and easy to use www.karicia.com Overview Most Likely you've Noticed your fingertips When you come out of the pool or bathtub after a long soak: They are wrinkled, so Much More Than When You Went in. Yet, soon after you dry off, They return to normal. This Is part of a complex process to keep your skin moist and flexible am and is related to The Reason MOST People Need to Apply moisturizing lotion or oil. Layers The Skin Is Made up of SEVERAL layers. The top layer Is The stratum corneum - Which in Latin means clustering Simply horny layer. This IS particularly thick layer at your fingertips and toes. This Is the layer flakes off and May That APPEAR have dandruff and Appearance in your bed linens, clothes and in your Elsewhere. Sebum To CounterAct The flaking, your epidermis, outer layer The hand of skin, producer sebum. Sebum Is A Protein That Repels water. However, When You Are In The Tub, scrubbing away the dead cells are your statum corneum, you also soak away Some Of The sebum. Malthus your skin can not repel the Water Before and so did it swells up, Especially in your toes and fingers. You do not notice this swelling Because You are Surrounded by fluids. Evaporation When You Get Out of the Tub, The excess water evaporate Quickly, however, It Takes along your skin to shrink back to original appearance icts. At this point, your Skin Is particularly dry Because it Does not Have As Much sebum, so it's a good idea to use moisturizer for Added Protection For Your Skin. Saltwater Interestingly enough, wrinkling May Not Happen If You are in saltwater. According To Grace Fields at Argonne National Laboratory, The Water is saltier if Than Your Skin, It Will draw water out of your skin. If The Water is less salty, your skin absorb the Water Will it around. This Is Because water travels From The Areas With The least salt concentration to Those With The Highest salt concentration. The water in saltier Than Your Body Is fresh water, hence The wrinkles. Nerve Damage When There Is Nerve Damage In The Gold Fingers toes, The Skin Does not wrinkle in water. When nerve damage has been "That Repaired, The Skin wrinkling reoccurs, at least in part. Many Hospitals and Other Medical Facilities check for nerve damage by submerging in water The body part and checking for wrinkling, According to Gregory Borah, MD, in a letter to "Discover" magazine. Similarly, diabetes, leprosy and Other Disorders Affecting The Nerves May Not Develop Skin wrinkles Because Of Their condition while Those With Cystic Fibrosis Have Been Shown to Develop Quicker Such wrinkling. The questions are: - What is the exact mechanism? - What case occurrence? - How to relieve? Thank you in advance, Sincerely,
03.05.2011
Obstipation, reflux
Since birth we worry about our little boy. He is 6,5 months old and it so happens that he has gastroesophageal reflux and constipation. He also coughs a lot and appears to have swollen tonsils. My nephew has CF. Our little boy is growing well. Do you think we check whether he has CF?
03.05.2011
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