Share your story

Use PHA’s form to submit a story and photos for the Right Heart Blog or Pathlight magazine. We provide prompts for many topics if you need help getting started.

HomeGet InvolvedRaise AwarenessShare your story

Your voice is powerful. The pulmonary hypertension community is built on the personal stories of thousands of patients, caregivers, friends, care providers and people like you. Each story can be a powerful tool for raising awareness as we work together to improving the quality of care for people with PH.

Complete the form below to submit your story and photo for the Right Heart Blog series or Pathlight magazine, PHA’s quarterly member magazine.

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Name *

First

Last

Email *

Address

Address Line 1

City

State

Zip Code

Gender

Male
Female
Other

Date of diagnosis

Patient has PH related to (check all that apply) *

Idiopathic
Congenital Heart Disease (CHD)
Chronic Thromboembolic PH (CTEPH)
Hereditary Hemorrhagic Telangectasia (HHT)
Scleroderma
Lupus
Pulmonary Veno-Occlusive Disease (PVOD)
Sarcoidosis
HIV
Chronic Obstructive Pulmonary Disease (COPD)
Methamphetamine Use
Sickle Cell Disease
Pulmonary Fibrosis
Sjogren's Syndrome
Sleep Apnea
Left Heart Disease
Liver Disease
Pulmonary Capillary Hemangiomatosis (PCH)
Mixed Connective Tissue Disease
Heart Valve Defect
Fen-Phen/Diet Pills
Familial
Other

This story is about my

I am a

Please check all statements that apply to your story

Yes! I want to share my story with other PHA members. PHA may use my story in their publications and on www.PHAssociation.org.
Yes! Sharing personal stories is a great way to raise awareness of PH. PHA may share my story with the media.
I want to help create a history of the PHA community. However, I would prefer that my story remain confidential at this time

Would you like to see some questions to get you started? *

Questions to Get You Started

General Questions

1. Were you initially diagnosed with PH or another disease such as asthma or COPD?

2. When did you first start experiencing PH symptoms?

3. How did you first learn the fact that you have PH?

4. Describe a difficult circumstance you had, due to PH, that you overcame?

5. (a) How did you find PHA? (b) What does PHA mean to you?

I Have The Right Heart to…

Share my Experience of being Newly Diagnosed with PH
Share my Experience of being a PH Long-term Survivor
Pediatric
Help Other Teens/Young Adults living with PH
Overcome Obstacles
Have a Career while living with PH
Travel and Explore
Advocate for PH & the PH Community
Raise Funds for PH
Share my Experience with CTEPH
Receive a Transplant
Care for Someone who has PH
Treat PH

Share my Experience of being Newly Diagnosed with PH

How has PH affected your life? Family? Friends?
What do you wish people knew about life with PH?
What should someone recently diagnosed with PH expect?
How do you maintain a positive outlook on rough days with PH?
What were some of the difficulties you experienced in getting diagnosed?
What tests have you done to get an accurate diagnosis of PH?
How has your life changed since being diagnosed with PH?

Share my Experience of being a PH Long-term Survivor

How has PH affected your life? Family? Friends?
What do you wish people knew about life with PH?
Do you have any tips or advice for others living with PH?
How do you deal with challenges PH presents you?
Are there any PH “life-hacks” that you want to share that have been helpful?
How do you maintain a positive outlook on rough days with PH?
Share a recipe, diet, or meal plan that is helpful for people with PH.
How has your life changed since being diagnosed with PH?

Pediatrics

What do you wish people knew about life with PH?
Do you have any tips or advice for kids living with PH?
What should a kid recently diagnosed with PH expect?
How do you deal with challenges PH presents you?
How do you maintain a positive outlook on rough days with PH?
How do you explain having PH to other children?

Help Other Teens/Young Adults Living with PH

Describe a difficult circumstance you had, due to PH, that you overcame?
How has PH affected your life? Family? Friends?
What do you wish people knew about life with PH?
Do you have any tips or advice for other teens/young adults living with PH?
How do you deal with challenges PH presents you?
Are there any PH “life-hacks” that you want to share that have been helpful?
How do you maintain a positive outlook on rough days with PH?
Share a recipe, diet, or meal plan that is helpful for people with PH.
How do you explain having PH to other teens/young adults?
How has your life changed since being diagnosed with PH?

Overcome Obstacles

Describe a difficult circumstance you had, due to PH, that you overcame?
How do you deal with challenges PH presents you?
Are there any PH “life-hacks” that you want to share that have been helpful?
How do you maintain a positive outlook on rough days with PH?
How do you explain having PH to your children or your caregivers children?
What were some of the difficulties you experienced in getting diagnosed?
How do you overcome fatigue in your daily life?
What do you when you become short of breath in a public setting?

Have a Career while living with PH

Describe a difficult circumstance you had in the workplace, due to PH, that you overcame?
What do you wish people knew about maintaining a job with PH?
Do you have any tips or advice for others living with PH in the workplace?
How does PH affect your work life?
How do you deal with challenges PH presents you in the workplace?
Did diagnosis affect your hire ability?

Travel and Explore

What are some of the difficulties you experience when traveling?
How do you deal with challenges PH presents you when traveling?
Are there any PH “travel-hacks” that you want to share that have been helpful?
How does fatigue affect your travel?

Advocate for PH & the PH Community

Share a time that you advocated on behalf of the PH community to your local government/representatives?
Has PHA helped set up a call or meeting, for you, with your local representatives?

Raise Funds for PH

What is the highest amount of funds you have raised in benefit of PH?
Share your experience participating in a PHA O2breathe event.
What led you to raising funds/donating to PHA?
Describe a fundraising project you ran, to benefit PH, in which volunteers played an important role. Explain what they did, and how you recruited, trained and motivated these volunteers.

Share my Experience with CTEPH

Have you experience a pulmonary embolism?
How often does fatigue or shortness of breath hinder your activity?
What steps did you have to go through to be properly diagnosed with CTEPH?
Have you undergone PTE surgery? What was your experience? How was your recovery?
How do you get back into your regular routine after undergoing treatment?

Receive a Transplant

How did you make the big decision to have a transplant procedure?
How did you mentally/physically prepare for the transplant procedure?
When did you first learn that a transplant procedure was necessary?
What was your most difficult moment during the process? What was your greatest triumph?
How did you find the support you needed during the process leading up to, during, and after your transplant?

Care for Someone who has PH

What do you wish people knew about caring for a person living with PH?
What led you to care for a person living with PH?
What unique challenges does caring for someone with PH present?
How do avoid burnout when caring for the needs of a person with PH?
How do you balance caring for someone else’s needs and your own?
Who do you lean on for support when you need it?

Treat PH

What is the most difficult part about treating a patient with PH?
When do you find the most joy in treating PH?
What led to you treating PH patients?
What is the biggest challenge you face in serving your patient population?