Top
20
Doctor insights on: Support Groups For Cystic Fibrosis

Share
Dr. Jeffrey Roth
319 doctors shared insights

Support Groups (Definition)

For information, resources, and support on specific diseases and conditions, see the links below. Additional local and national support groups can be found on the web, through local libraries, your health care provider, and the yellow pages ...Read more


2

2
Are there support groups for people with pancreatic cancer?

Are there support groups for people with pancreatic cancer?

PANCAN: The best group out there is the pancreatic cancer action network, aka pancan. Their liason program connects people with experience with pancreatic cancer with those seeking more information. www.pancan.org. ...Read more

See 2 more doctor answers
5

5
Are there support groups for pick's disease?

Are there support groups for pick's disease?

See below: These websites below might serve as a starting point. Good luck! http://www.Ftdsg.Org/index.Htm__ http://www.Theaftd.Org/. ...Read more

6

6
Are there online support groups for juvenile retinoschisis or enucleation?

Are there online support groups for juvenile retinoschisis or enucleation?

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 google search. ...Read more

8

8
What types of support resources are available for cancer patients, families?

What types of support resources are available for cancer patients, families?

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 american cancer society, the leukemia/lymphoma foundation, or the leukemia society for resources. ...Read more

9

9
Which sports/physical activities are good for someone with cystic fibrosis?

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, there has been some interesting research done in australia, which suggests Hypertonic Saline (e.g., salty air) inhalation in CF patients was beneficial in maintaining lung function. Why? A doctor noticed surfers with CF tend to have better outcomes! ...Read more

See 1 more doctor answer
10

10
Does lung transplant improve quality of life for people with cystic fibrosis?

Does lung transplant improve quality of life for people with cystic fibrosis?

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 6 months after transplant. The improvement after lung transplant can last a long time (years). ...Read more

See 1 more doctor answer
11

11
Is there gene therapy for cystic fibrosis and health centrefor this disease in the us?

Is there gene therapy for cystic fibrosis  and health centrefor this disease in the us?

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 excellent source of information on these centers. The treatments for CF are improving, and expanding constantly. The life expectancy for patients with CF has steadily increased but is still limited by pulmonary disease. ...Read more

12

12
How does gene therapy help a cystic fibrosis patient?

How does gene therapy help a cystic fibrosis patient?

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 diet and life style. I havegiven children with CF vitamin supplements. They help greatly but there is no cure. Find a physician who uses nutrient treatment. ...Read more

13

13
What are some mitochondrial disorder support groups in existence?

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 you go online to some of the big centers in the us who deal with the diagnosis and treatment of these disorders (ie. Children's hospital of philidelphia, cleveland clinic) and see if they have online support groups and parental geoups. ...Read more

14

14
Can there be addiction support groups for chronic pain patients?

Can there be addiction support groups for chronic pain patients?

Depends: There seems to be a confusion in your mind about physical dependence and addiction. Addiction is psychological dependence on the substance not for controlling the pain but feeling good. Pain is not the issue in such cases and usually illegal means employed to obtain the substance. For such persons there are detox clinics followed by support group. If you obtain opioids for pain, no need for group. ...Read more

15

15
Does gene therapy help a cystic fibrosis sufferer?

Does gene therapy help a cystic fibrosis sufferer?

Trials: Clinical trials for genetic therapy are underway. As of this time there is no approved method for gene tx in cf. Kalydeco, (ivacaftor) a new drug, dose reverse the effects of one subtype of cf, but it dose so by aiding the damaged sodium-chloride transporter to get in proper position and function normally. ...Read more

See 1 more doctor answer
17

17
What are some reputable support groups for incest survivors?

Two 12 Step groups: You might want to consider attending a meeting of survivors of incest anonymous (sia) and/or incest survivors anonymous (isa) the most important difference is that anyone who has been a perpetrator is asked not to attend isa even if the perpetrator was also a victim of incest. ...Read more

See 2 more doctor answers
Dr. William Walsh
995 doctors shared insights

Cystic Fibrosis (Definition)

A genetic disorder of the lungs and digestive tract that causes repeated lung infections and inhibits ...Read more