If you or someone close to you has recently been diagnosed wit PAH, SPH, PAH or PH, you may be feeling a bit dazed or overwhelmed at this point, or you may be feeling all alone with this frightening diagnosis.
First, let's begin by clarifying the confusing terms often used to describe this type of disease. They may seem too similar to be meaningful, but they are full of meaning to your physicians.
Basic Info on Terms Used
PPH is a term no longer in use for a disease known as Primary Pulmonary Hypertension. PPH can be described as a disease of unknown origin that results in the progressive narrowing of the blood vessels of the lungs, causing high blood pressure in these blood vessels that eventually leads to heart failure. This term is no longer used for newly diagnosed patients.
SPH is also a term no longer in widespread use to describe a class of diseases marked by increased pressure in the lung vasculature where the underlying cause has been identified.
PH is used to describe all types of Pulmonary Hypertension which is defined as high blood pressure in the arteries and/or capillaries that supply the lungs with oxygen rich blood or high pressure in the lung itself. There are many underlying causes for the development of PH. Progression of this disease largely depends on the underlying cause.
PAH (Pulmonary Arterial Hypertension) is marked by continuous high pressure in the pulmonary artery which results in vascular changes within the lungs and increased resistance making the heart work harder. The underlying cause may be known or unknown.
For the World Health Organization's (WHO) list of functional classifications including underlying causes, go to: http://www.pah-info.com/Classification_of_PAH
Overview
Pulmonary Hypertension was until recently often misdiagnosed in the early stage by family physicians. If you thought you were just a little too out-of-shape, "feeling your age" or believed asthma was your problem, you would not be alone. Because PH often exists as a disease secondary to another disorder, it can take time to diagnose. Some people present symptoms with no apparent underlying cause, but these cases are relatively rare. The true incidence is unknown, but within a few years, that will surely change. A world-wide database to collect data on PH patients (REVEAL) is in the works. There is a good chance the collection of treatment data will be of great benefit in the years ahead.
PHCentral is here for you. We hope to answer many of your questions, connect you with a network of people who know what you are going through, and keep you abreast of the latest news about PH.
Here is some of what PHCentral has to offer. Please note, it is not a complete list of sections and topics. This list is only meant to get you started. Welcome to PHCentral.
Legal Issues
Coping With PAH
Here, you'll find many ways of connecting with others to learn more about PAH and to find support from caring people.
- Support Groups
- PhCentral Talk provides information and instructions for connecting to on-line communication and support groups.
- PH Diaries are written by PAH patients and caregivers who wish to share their lives with others.
- Tips and Tricks Information and tips for making your life a little easier; a place to share practical and useful tips with others.
- Books related to emotional aspects of Chronic Illness, Children, Caregivers, and Depression. Links for purchasing books directly from Amazon.com are part of this page.
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Social Security Claims—Making Your Efforts Count
Have you been trying to navigate the social security system? Perhaps you're thinking about applying for disability but you're not sure how to proceed? We have someone who can help. Alan Harder worked for SS agency for decades before retiring to spend more time with his wife in 2006 and he's joined the PHC team.
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Social Security Claims—What's in YOUR file?
Social Security disability decisions have an air of mystery about them, don't they? Especially when claims are denied, the first question is: "How could they possibly turn me down?"
The answer will become more clear if you look at the records SSA relied on to decide your claim. You have a right to view this information, and getting it is easier than you might think.
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Alphabet Soup Spelled Out—(Where Your Disability Claim Goes After it's Filed.)
If you've been talking to folks at your local social security office, you might easily get confused. As it turns out, they have their own special vocabulary. If you want to crack the code, you'll want to read Alan Harder's article - the third in a series - on demystifying the Social Security System.
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Work and Social Security:
(Yes! You Can!)
If you are thinking about returning to your old job or tackling some other employment, you'll want to read this article.
- Financial Decisions includes an essay entitled "How to Deal with Financial Hardship and Your Health Care Providers"
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Books related to financial and insurance aspects of Chronic Illness. Links for purchasing books directly from Amazon.com are part of this page.
How do I learn the latest information about PAH?
The Newsroom provides links to articles relevant to PH featured in current news media. New articles added daily!
Archives of past news stories are also available.
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Commentaries and reflections written by people with PAH, Caregivers, and Physicians
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