Just Call Us!

The Support Line can make a difference in your life!

Whether you’re newly diagnosed or have been living with PH for years. Whether you take care of a loved one with PH or you simply are a friend or family member who wants to better understand the disease or want to get involved. The Support Line is for any and all questions!

Our Support Line Volunteers want you to know what they do every day and why they want to talk to you:

  • Part of being a Support Line volunteer is being able to listen to and hopefully help those newly diagnosed and even some who have been around the block once or twice. To let them know they are not alone. We do understand and we will laugh with you, or shed a tear or two; knowing this helps.

  • Even healthy people have bad days. I think we sometimes forget that one, but anyone should call if they want some help or some cheer.

  • My goal is then to set their mind at ease -- well as best as I can. To help them understand there is hope and there are others who do understand what they are going through.

  • I'm not sure those outside the PH community understand the importance of our volunteer Support Line program. I mean a patient talking with a patient; how unique is that? So many have said and usually with a sigh, you do understand, you know what I am going through. Just that concept is a relief as well as a release for them.

Support Line Stories of Hope

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Two Stories of Hope and Help from Support Line Volunteer Merle Reeseman

150px-Merle-ReesemanI received a call on a Saturday evening. A newly diagnosed patient was very frustrated and not having good results with her oral medication.

She wanted to know when it would start working. She wanted to stop taking it, just give up and throw in the towel. She had tried to call her doctor and her pharmacy (I found out she had the wrong number)... and because of being the weekend, no one was responding. Frustration took over. She found the Support Line number and called.

I was able to help her. I asked who sent her meds and I contacted that company for her (by that time she was too upset to make the call). I explained the situation, their nurse called and talked with her — and at my request, called me back to let me know everything worked out. She would be staying on her meds and would call her doctor the first thing Monday morning.

The Best Christmas Present Ever

This morning, early, the phone rang. Thinking it was the grandkids I answered Merry Christmas Ho Ho Ho — they always call me early to tell me what Santa brought; anyway, there was a kinda timid voice on the other end asking if this was the PHA Support Line — I said yes and explained about the kids.

It was a lady I spoke with last week who was very scared and I tried to explain that with treatment you have a chance. She said her doctor put her on diuretics and just within the past few days she doesn't have to sleep in the recliner and actually slept in her bed last night. She wanted to tell me because she said I gave her hope. I told her that was the best Christmas present she could give me. The Support Line is so awesome. She has an appointment with a PH specialist in January.

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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. PHA does not endorse or recommend any commercial products or services.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
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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.