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Our goal at the CPF is to help you navigate your way as you deal with Pulmonary Fibrosis. That navigation will be easier when you find there are tools to help you maintain your quality of life, and people dedicated to protecting your rights as a patient, assisting you to find treatments and offering support in a multitude of ways. We are also available to help you directly - you only need to call us -(888-222-8541).
The multiple segments of this website are addressed to a specific audience, but we feel that all comers can get a handle on the impact of the disease, the efforts to find treatments, and the work being done in the community, by reviewing all of the sections contained herein. It is also suggested that you take your time in absorbing the information - you do not need to try and learn everything in one session.
There are currently no FDA approved treatments for this disease, but there are multiple avenues of action that you can take to improve your life or the life of your impacted loved one. Early stage patients may not need any special care, but keeping yourself fit is especially important no matter what stage of disease you or your loved one are experiencing.
Patients find that exercise, proper oxygenation of the blood, prescription drugs when your doctor feels they are necessary, psychological support, and information about transplant, are some of the key steps you can take to be in control of your situation. Pulmonary rehabilitation is of great help to many of our patients and the staffs in those programs are often the most available to answer your questions. Be sure to speak with your doctor about any exercise programs or other changes to your lifestyle.
It is important to note that although there are no approved treatments here in the US, there are at least 11 pharmaceutical companies now conducting new drug trials in the search for answers. We encourage patients to join drug trials when possible because they are critical to understanding the disease and fundamental to the finding of answers to PF. Complete answers may not be found this week or next, but treatments are now closer than ever.
For PF loved ones, the challenge is also incredibly difficult. It is recommended that all those impacted seek psychological support through networks of family and friends, patient/family support groups, or through a professional counselor , rather than to try to handle this challenge on their own.
As of this spring, the CPF has formed the "Daughters of PF" so that women who have lost a parent or another relative, can come together to battle the disease and help one another regain their power. We welcome sons as well, and hope that men will step up and join the women in the battle.
Help us win the fight against PF by going to the advocacy section of our website and taking your own action on behalf of all our patients. We at the CPF are giving voice to the tens of thousands of patients with PF and we encourage and welcome your being a part of this vast and growing chorus for change.
Additional Introductory Reading:
- National Jewish Counselor Provides Answers, Support for Families with PF
- New Position Paper Offers Ethical Guidance to Physicians for Developing Mutually Supportive Patient-Physician Relationships
- Clinical Trials Q&A
- Transplant Special Issue - Information regarding lung transplantation
- Getting the Air You Need - Information about oxygen use for PF patients
