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CF Caregiver Support Group

October 15, 2018

Caregivers need support too! If you are a parent, spouse, partner or caregiver for a CFer, please give yourself the gift of finding much needed support in our community. This call in support group is hosted by our dear friends at Cystic Fibrosis Research, Inc.and Stanford Children’s Health – Lucile Packard Children’s Hospital Stanfordā¤šŸ¤—

Next Group:  October 16, 2018

Two Groups to choose from:

Parents of children with CF:  5:00pm to 6:00pm PST

Parents/Spouses/Partners of adults with CF:  6:00pm to 7:00pm PST

Group meets the third Tuesday of Every Month

To participate Call 650-736-4444

Access Code: #070111028

Facilitated by Meg Dvorak, LCSW

CF Social Worker at Stanford

Group provided by CFRI

CF Terms, CF University

CF University Term: Absorption/Malabsorption

March 13, 2018

Visit Claire’s CF University tab in the menu across the top for more CF terms and tips:

The main purpose of the gastrointestinal tract is to digest and absorb nutrients (fat, carbohydrate, protein, and fiber), micronutrients (vitamins and trace minerals), water, and electrolytes. Digestion involves both mechanical and enzyatic breakdown of food. Mechanical processes include chewing, gastric churning, and the to-and-fro mix

ing in the small intestine. Enzymatic hydrolysis is initiated by intraluminal processes requiring gastric, pancreatic, and biliary secretions. The final products of digestion are absorbed through the intestinal epithelial cells.

Digested food is now able to pass into the blood vessels in the wall of the intestine through the process of diffusion. The small intestine is the site where most of the nutrients from ingested food are absorbed. The inner wall, or mucosa, of the small intestine is lined with simple columnar epithelial tissue. Structurally, the mucosa is covered in wrinkles or folds called plicae circulares, which are considered permanent features in the wall of the organ. They are distinct from rugae which are considered non-permanent or temporary allowing for distention and contraction. From the plicae circulares project microscopic finger-like pieces of tissue called villi (Latin for “shaggy hair”). The individual epithelial cells also have finger-like projections known as microvilli. The function of the plicae circulares, the villi and the microvilli is to increase the amount of surface area available for the absorption of nutrients.


Malabsorption  constitutes the pathological interference with the normal physiological sequence of digestion (intraluminal process), absorption (mucosal process) and transport (postmucosal events) of nutrients.

Blog & Events, Daily Life

Need Help Applying for Social Security Disability Benefits?

April 26, 2017


Our friends at Disability Benefits HelpĀ recently sent us a very helpful article so that our supporters know where to turn when the time comes to apply for Social Security Disability benefits.Ā  Most of us know that it can be a complicated system to maneuver and we have found it very helpful to speak with an informed professional regarding our particular case.

Be sure to take advantage of this program established to aid persons with disabilities.Ā  Find out today if you or your child qualifies.

How to Qualify for Disability Beneļ¬ts with Cystic Fibrosis

Cystic ļ¬brosis (or CF) is a rare, inherited disorder that results in mucus build-up in the lungs and digestive system. Living with “CF” can be difļ¬cult, especially as a growing child or an adult ļ¬nding it hard to continue working. However, for those affected by a severe diagnosis, Social Security disability beneļ¬ts may be able to help. If you or a loved one has CF, continue reading below to learn the medical requirements of disability beneļ¬ts and the potential programs that may be available to you.
Medical Requirements

Qualifying medically for disability beneļ¬ts starts with the ā€œBlue Bookā€. This book contains all Social Security-approved disorders, as well as the severity necessary in order for an applicant to be eligible. When the Social Security Administration (SSA) looks over your application, they begin by comparing your diagnosis to its entry in the Blue Book. To determine if you may qualify, we must look to the Blue Bookā€™s description of cystic ļ¬brosis. CFā€™s entry can be found under Section 3 of the Blue Book: ā€œRespiratory Disordersā€. While it may look long and intimidating, this only means that people with CF have a variety of ways they can qualify medically for beneļ¬ts. These include:

ā€¢Receiving a low enough score on an FEV test. FEV tests (forced expiratory volume tests) measure your ability to exhale properly. Depending on height, age, and sex, people need to be capable of expelling with a certain amount of force in order to pass the test. Those with low enough numbers qualify as disabled and are eligible for beneļ¬ts.

ā€¢Symptoms requiring multiple hospitalizations. Most people with multiple CF-related hospital visits (more than three within a 12-month period, each at least one month apart) are medically eligible for disability beneļ¬ts.

ā€¢Lung collapse requiring chest tube placement. Referred to in the Blue Book as ā€œSpontaneous pneumothorax secondary to CFā€ (meaning lung collapse caused by CF). Those who require a chest tube due to this condition will qualify medically for beneļ¬ts.

ā€¢Respiratory failure. Any person whose CF requires invasive mechanical ventilation, ventilation with a BiPAP, or a combination with both for at least 48 hours is considered at-risk for further severe lung trouble, qualifying them for beneļ¬ts.

ā€¢Pulmonary hemorrhage requiring vascular embolization to control the bleeding. Those who experience internal bleeding in the lung (pulmonary hemorrhage) and require invasive tools to block off the affected blood vessels in the lung (vascular embolization) are medically eligible for beneļ¬ts.

ā€¢Having low enough levels of SpO2. Those who receive a low enough score twice on a pulse oximetry test to measure the percentage of oxygen in their blood (SpO2) are medically eligible for beneļ¬ts.

ā€¢Two of the following complications within a 12-month period: 10 consecutive days of necessary IV antibiotics; pulmonary hemorrhage requiring hospitalization; weight loss that requires daily supplemental nutrition via a gastronomy tube for at least 90 days; Cystic ļ¬brosis-related diabetes (CFRD) requiring daily insulin therapy for at least 90 days.

If you are unsure whether or not you qualify medically for beneļ¬ts, it is best to speak to your physician to analyze your case and compare it to the Blue Bookā€™s entry.

If you are medically qualiļ¬ed for beneļ¬ts, then the next step is to determine which Social Security program may be best suited for you. While most applicants typically qualify for only one program, some are eligible for both.

Social Security disability insurance (SSDI) is for people 18 or older with a history of working and paying taxes. To qualify, applicants must have enough ā€œcreditsā€ to their name, which are automatically earned up to four times a year by working taxable jobs in the United States. The older an applicant is, the more credits they require to be eligible for beneļ¬ts. For example, while a 24-year-old needs only 6 credits (1.5 years of work) to qualify, a 46-year-old requires 24 credits (6 years of work).

Supplemental Security Income (SSI) is for people under 18, without prior work experience, or with particularly low income. Instead of a credit system, applicants are eligible if they are considered too low-income to support themselves independently. Applicants must make under $735 to qualify, though some forms of income (half of earned income made from work, SNAP beneļ¬ts, etc.) are not counted. Applicants under 18 are evaluated using their parentsā€™ income instead. Income charts for all SSI applicants can be referenced on the SSAā€™s main website.
Starting the Application
SSDI applications are available online on the SSAā€™s website. The website also contains helpful information, such as lists of necessary paperwork and FAQs. You can also call your local Social Security ofļ¬ce for help on your application, or to make an appointment to ļ¬ll it out in person.

SSI applications are currently only available in person. However, to prep important information prior to your application appointment, the Online Application for Disability Beneļ¬ts can be ļ¬lled out on the SSAā€™s website. Applicants under 18 also require additional paperwork (found online) to gauge eligibility and give consent for doctors to forward necessary paperwork.
This article was written by the Outreach Team at Disability Beneļ¬ts Help. They provide information about disability beneļ¬ts and the application process. To learn more, please visit their website at http://www.disabilitybeneļ¬ or by contacting them at