My support systems provide me with courage, sympathy, and compassion and help me to persevere in difficult moments. A large part of my support comes from an online community called the Pulmonary Hypertension News Forums. The PH News Forums have allowed me to share my experiences openly by connecting me with other PH patients, family members, caregivers, and medical professionals.
As a moderator for the PH News Forums, I feel fortunate to interact with and get to know so many members. Reading each person’s story has really made me stop and think about the impact this disease has on each person in the PH community.
Being a part of the forums gives me a voice in my healthcare and allows me to advocate for myself and others. The range of forum topics gives me a safe space to open up about mental and physical health without fear of judgment.
The topics covered on the forums include:
- Awareness and advocacy: Conversations that take place here are about strategies to raise awareness, ways to advocate for pulmonary hypertension, and ideas to help with funding.
- Community events: In this forum, members stay up to date on events happening within their region and can discuss upcoming conferences.
- Dating and relationships: This has always been a hard topic to address with those who don’t seem to “get it.” Dating and being in a relationship can have so many added stressors when managing a chronic illness.
- Diagnosis information and general questions: This is a popular forum, especially for those who are newly diagnosed.
- Diet and nutrition: These topics range from discussions about weight and nutritional tips to recommendations for a more “natural” supplement to the many daily medications.
- Exercising with PH: Members share their experiences with exercises that have been beneficial and modifications to workouts. Encouragement is given to those who are just starting out with an exercise plan.
- Lung transplantation: The lung transplant forum is a space to learn more and connect with patients and caregivers who have been through, or are going through, this process.
- Mental health: I have found this forum particularly beneficial. It allows me to discuss things like depression, anxiety, PTSD, insomnia, etc.
- Oxygen users: As someone on oxygen, this forum has allowed me to write to other members and discuss things like using oxygen in public and self-esteem while wearing oxygen.
- PH caregivers, family members, and spouses: The forums aren’t just a place for patients. They also are for caregivers, family members, and spouses to share their stories and experiences.
- Research and development: These are discussions on the latest medications, medical devices and equipment, and testing related to PH.
- Side effects and symptoms: Topics include managing dizziness, nausea, fatigue, low blood pressure, and other side effects and symptoms.
- Teens and young adults with PH: Anyone with PH under the age of 30 can join in the discussions on this forum.
- Treating PH: Whenever I want advice about medications and treatment options and am curious about what other members have experienced, I can find several responses here.
- Working with PH: Working with PH can cause a different set of struggles. This forum is a good place to talk about employment options, disability advice, and modifications and accommodations that could be beneficial when working with PH.
How to register for the PH News Forums:
Create a profile by visiting the PH News Forums homepage and clicking “register.” (The register link is located on the right side of the page under the “Log In” fields.)
You will be prompted to enter some basic information including a short bio, which is optional.
From there, go to the main forums page. The tabs at the top of the page include:
- About our forums
Remember, these are public forums. All posts will be visible to anyone who visits this page. The forums allow you to reply to other users’ posts or to start a discussion topic of your own. Moderator Kathleen Sheffer and I monitor all discussions.
Private messaging is available by clicking on an individual user and then “private message.” Members can feel free to message Kathleen or me in private with comments or specific questions about the forum.
Why should you join?
The PH News Forum allows members to connect and build meaningful relationships. Our current members find it comforting to know they are not alone living with this disease.
If you’d like to join the conversation and become a member, click here. Or, click the “Forums” tab at the top of the website’s homepage.
Kathleen and I hope you’ll join our conversations. I look forward to hearing from new members soon!
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.