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    • #14391

      If you live with a chronic yet invisible illness like PH, getting proper accommodations is essential in order for you to continue to work for as long as possible. Click here to read about how Brittant Foster sought workplace accomodations in her job as a special educator before taking on another fulflling role with BioNews Services.

      Have you continued to work since being diagnosed with PH? How do you feeling about asking for workplace accomodations or possibly stopping working?

    • #23093
      Sandra Guajardo

      I work full time as a financial analyst (desk job). Since over a month ago I’ve requested workplace accommodations. They consisted of having a flexible work schedule (if I felt sick and arrived late to work, if I could make up the hours later in the week), be able to work from home two days out of the week, and have a sofa in my office to be able to take breaks. Our place of employment allows two 15 minutes breaks during the day (one in the morning and one in the afternoon). My primary doctor filled out the forms stating the same items. I just received notification from Human Resources that tomorrow they are providing a footstool. My supervisors have advised Human Resources they are okay with my requests and that they will purchase the sofa and still HR will not even approve the sofa. Are there any resources that can assist us in requesting workplace accommodations? I just don’t think they understand the seriousness of PAH, even after I showed them my Veletri pump.

    • #23096
      Colleen Steele

      @sandra-guajardoutrgv-edu this is such an important topic. Thank you for opening up the discussion with your own experience.

      My son is in college and hasn’t held a full time job as of yet so I don’t really have experience to share. I do have a thought though…do you order your Veletri supplies from Accredo by any chance? If you do, reach out to their customer service center because they might have good advice for you and possibly even be able to help you communicate with your HR department.

      When my son was in grade school and on IV Flolan, an accredo nurse came met with his teachers and staff every year to explain PH, the treatments and his needs. I realize this is “work” but since they don’t seem to be listening to you, maybe you will need to go to this extent to accomplish some understanding.

      The second video in this link about Emily is similar to how Accredo helped my son.

    • #23104
      Sandra Guajardo

      I do get my supplies from Accredo and there is a local nurse that has assisted me at home. That’s a great idea for the nurse to explain the situation to HR. I think the most common way of people’s thought process is that if you’re taking medications you’re health will improve or be cured. It’s a frustrating situation to be trying to make a strong effort to continue to work and facing additional challenges.

    • #23108
      Brittany Foster


      Something that I would request for workplace accommodations would be to provide as much medical documentation and doctor’s notes in order to get what you need. I am not sure if the reason for the sofa arrangement is because they are considering this an “unreasonable request” you can ask them what the exact reasoning is behind their decisions. For me, something that was a problem in the beginning was getting air conditioning in the rooms where I was a teacher, but after medical necessity and going to my representative for support for this within the school system it was approved. Not sure if your job is union based but there are people higher up than HR to help you through this. Even possibly a disability lawyer or a disability advocate in your area?

    • #23129
      Colleen Steele

      @sandra-guajardoutrgv-edu I would definitely as your Accredo nurse. If she can’t do it I think they have nurses who specialize in doing just that, going out to schools and work environments to advocate for patients. They will provide handouts and open a discussion but also help explain how you are still able to function. It’s important that you employer understands that you are able to work but you need certain accommodations and understanding, and for them not to provide for you is discrimination.

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