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support groups for cystic fibrosis

A 37-year-old member asked:
Dr. Josephine Ruiz-healy
38 years experience in Pediatrics
Overall 1/3700: Acording to the CF foundation: the overall birth prevalence is 1/3700 . It can occur in any race, however the greatest incidence is in caucasians of n ... Read More
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A 38-year-old member asked:
Dr. Gerald Mandell
51 years experience in Nuclear Medicine
Certainly: Cystic Fibrosis (CF) most common life-limiting genetic disorder of Caucasians, affecting approximately 30K people in the US.A, impacting mainly respir ... Read More
A 55-year-old member asked:
Dr. Michael H. T. Sia
30 years experience in Pediatrics
As a carrier: Genetic carrier testing: more than 10 million americans are symptomless carriers of the defective CF gene. This blood test can help detect carriers, ... Read More
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A 51-year-old member asked:
Dr. HARRY OPSIMOS
21 years experience in Pediatric Pulmonology
Yes: Yes it is possible. Presentation of cystic fibrosis varies greatly, and it is possible, depending on your specific mutation (and other factors) to pre ... Read More
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A 54-year-old member asked:
Dr. Andrew Berry
13 years experience in Clinical Psychology
Likely yes: They should be online, and if not, ask your doctor if he/she knows of such things.
A 31-year-old member asked:
Dr. Reza Shirazi
19 years experience in Radiation Oncology
Yes: Call your local american cancer society for more information and support, if in the usa. They can connect you with national or local organizations and ... Read More
A 59-year-old member asked:
Dr. Stuart Flechner
45 years experience in Urology
Yes: Many do each year.
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A 40-year-old member asked:
Dr. Larry Lutwick
48 years experience in Infectious Disease
Yes: Because of pancreas damage as well, combined bilateral lung plus a pancreas transplant may be done.
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A 44-year-old member asked:
Dr. Miroslava Fox
14 years experience in Clinical Psychology
See below: These websites below might serve as a starting point. Good luck! http://www.Ftdsg.Org/index.Htm__ http://www.Theaftd.Org/.
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A 48-year-old member asked:
Dr. Jay Bradley
17 years experience in LASIK Surgery
Www.losteye.com: www.losteye.com is a valuable online support resource. There are many other groups which can be found my searching "enucleation support group" on a g ... Read More
A 46-year-old member asked:
Dr. Allan Goldstein
55 years experience in Internal Medicine
Cancer society: They will point you in the right direction.
A 47-year-old member asked:
Dr. Steven Ginsberg
36 years experience in Hematology and Oncology
Many: There are many support services available for patients and families. One can begin to search for local resources. If none are available, contact the a ... Read More
A 50-year-old member asked:
Dr. David Escobar
8 years experience in Family Medicine
Depends on Lung Fx: The level of physical activity for a child with CF is an individual choice that should be made in consultation with the treating physician. However, t ... Read More
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A 48-year-old member asked:
Dr. Aaron Milstone
26 years experience in Pulmonology
Yes: Improvement in quality of life after double lung transplant can be dramatic. Most patients come off of oxygen and have much better quality of life by ... Read More
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A 51-year-old male asked:
Dr. Douglas Arenberg
30 years experience in Pulmonary Critical Care
No and yes: Safe effective gene therapy for CF is a dream that we have yet to realize, but there are many excellent CF centers in the us. The CF foundation is an ... Read More
A 37-year-old member asked:
Dr. Derrick Lonsdale
72 years experience in Preventive Medicine
So far not at all: Trying to replace the faulty gene has been a failure so far. The new science of epigenetics tells us that our genes (even "bad" ones) are changed by d ... Read More
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A 48-year-old member asked:
Dr. Holly Maes
35 years experience in Pediatrics
Look online: Since mitochondrial disorders are still considered rare disease entities, support groups at a local level would be very dificult to find. I suggest y ... Read More
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A 56-year-old member asked:
Dr. Prem Gupta
47 years experience in neurology
Depends: There seems to be a confusion in your mind about physical dependence and addiction. Addiction is psychological dependence on the substance not for con ... Read More
A 49-year-old member asked:
Dr. David Escobar
8 years experience in Family Medicine
Not effective yet: As of yet, there are no effective gene therapies for cystic fibrosis. However, there is a new drug in clinical trials right now that might do just thi ... Read More
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A 53-year-old member asked:
Dr. Douglas Fronzaglia ii, do, ms
20 years experience in Geriatrics
Yes: Contact you local hospital or health department for details.
A 39-year-old member asked:
Dr. Jonathan Nehrer
35 years experience in Child Psychiatry
You have to search: Locally. Try asking around, at local hospitals, community mental health centers, women's health centers, and the private offices of counselors who do ... Read More
A 38-year-old member asked:
Dr. Michael Korona
32 years experience in Interventional Radiology
Good [email protected]: Cff.Org.
A 45-year-old member asked:
Dr. Richard Bensinger
51 years experience in Ophthalmology
Yes: Most large communities have a retinitis pigmentosa support group. You can find out about them from your local society for the blind, state agencies f ... Read More
A 54-year-old member asked:
Dr. Ahmad M Hadied
48 years experience in Orthopedic Surgery
Check this web site: I am sure they help to find one. Osteogenesis imperfecta foundation: www.Oif.Org/.

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