workingWORKING WITH PH

You’re an active contributor to the workforce…and you have just been diagnosed with pulmonary hypertension. You have spoken about your diagnosis with friends and family, begun your treatment and have started to adjust to a different lifestyle. At this point, you may be wondering whether you will be able to return to work.

While many patients may find it impossible to continue working full-time, or in the line of work in which they are trained, there are resources and options available to all patients who want to maintain active, productive lifestyles – regardless of physical ability. Talk to your PH specialist and consult these resources to help you navigate the decision.

Know and Protect Your Workplace Rights

Even on the days when you’re feeling your best, PH can take a toll on your endurance and activity level. PH patients – regardless of the severity of their illness – have strong legislative advocates in the workplace, and plenty of resources to help stay on top of employment issues. Read on to learn more about employment-related disability legislation and the resources available to help you make the most of these laws.

Americans with Disabilities Act (ADA)

The ADA states that employers may not ask job applicants about the existence, nature or severity of a disability. This includes questions about your family’s health or any past illnesses or surgical procedures you have undergone.

Employers may ask you whether you are able to perform the essential functions of a job, but must make reasonable accommodations to allow you to perform your job as necessary (such as providing a refrigerator or freezer for your medications if necessary).

Learn more about how the ADA can be used to your advantage (PDF)

Complaints against employers who may have violated provisions of this Act (i.e. discrimination against disabled job-seekers) may be filed with the Equal Employment Opportunity Commission.

PHA Insurance Guide

You can also visit our Insurance section to learn more about work-related issues such as applying for Social Security disability status, or for information and resources on dealing with unemployment and financial assistance.

Ticket to Work and Work Incentives

As treatments improve, more PH patients are able to work. The Ticket to Work and Work Incentives Act of 1999 pays benefit planners (who work for nonprofit groups or state agencies) to advise persons who currently receive Social Security disability benefits, but who want to return to work.

The planners will explain SSA’s work incentives, how going back to work will affect your benefits, and what vocational and rehabilitation and other support might be available.

Advice from Working PH Patients

Here are some additional tips and information on more helpful work-related legislation from working PH patients, including some that have been excerpted from the Patient’s Survival Guide .

  • If you are currently employed and concerned about your disability affecting your employment status, read this New York Times article (free registration required) on how to protect your job while coping with a chronic disease.

  • For a personal perspective on PH in the workplace, listen to the 2008 PHA Conference audio recording of the “Working with PH” Patient/Family-Led Session (mp3).

  • If you don't treat your disability like a big deal, others won’t either.

  • If you sign up for health insurance the first time it is offered, you may not have to take a physical or worry about preexisting conditions.

  • If you run into discrimination because of your PH and are a union member, your union can help fight for your rights.

  • Create a "Just in Case" PH Emergency Kit

 

PH COMMUNITY

Connect and share your experiences with PH with people around the world. Connect online or with a support group near you.

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Working with PH

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In this recording, Sally Maddox, Leslie Polss and Joanne Sperando-Schmidt share their tactics for managing a job and PH.

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Support Line

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Our Journeys

Ellen Smith


Read and listen to the stories of other patients' journeys living with PH and share your own story.

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Patient's Survival Guide

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Pulmonary Hypertension: A Patient's Survival Guide is the most comprehensive patient resource on pulmonary hypertension.

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.