028 The Importance Of Early Diagnosis - PH And Rare Disease

Smart Planning 101 with Nicole Wipp

Content provided by Attorney, Entrepreneur, and Founder of Smart Planning 101, Nicole Wipp, Founder of Smart Planning 101, and Nicole Wipp. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Attorney, Entrepreneur, and Founder of Smart Planning 101, Nicole Wipp, Founder of Smart Planning 101, and Nicole Wipp or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.

8+ y ago 41:55

MP3•Episode home

Archived series ("Inactive feed" status)

When? This feed was archived on August 02, 2022 05:15 (2y ago). Last successful fetch was on January 27, 2022 20:18 (2+ y ago)

Why? Inactive feed status. Our servers were unable to retrieve a valid podcast feed for a sustained period.

What now? You might be able to find a more up-to-date version using the search function. This series will no longer be checked for updates. If you believe this to be in error, please check if the publisher's feed link below is valid and contact support to request the feed be restored or if you have any other concerns about this.

When it comes to rare disease and chronic illness, early diagnosis is important for many reasons - but even more so when a person has a condition known as pulmonary hypertension (PH). Why? If left untreated, death is almost certain - and the average length of survival without treatment is three years.

http://www.SmartPlanning101.com/28 **Doctors are commonly taught to look for horses, not zebras. But what if it really IS a zebra?**

The good news is that there are more and more options for treatment of this rare condition, but like all rare diseases, getting to the proper diagnosis is key. Even if you don't have PH, however, this episode is important. My guest, Jessica Armstrong (see bio below), and I discuss many topics that are applicable to almost anyone dealing with an illness and the medical profession - how and why you need to take control of your own care!

In This Episode, You Will Learn:

The many reasons why rare diseases are misdiagnosed
Ways to combat misdiagnosis and lack of proper treatment - how to take control
What tools are available to assist you - and get a great tool for FREE
Jessica's personal story and how it reflects that of many others
The importance of community and reaching out
Why living with "invisible illness" is particularly frustrating!

What is Pulmonary Hypertension?

Pulmonary hypertension is high blood pressure in the lungs, which impacts patients of a number of other chronic illnesses, including:

32-85% of patients with Pulmonary Fibrosis
up to 40% of patients with left heart disease
15-20% of patients with HHT
8-12% of Scleroderma patients
3-5% of patients who have previously suffered a pulmonary embolism
0.5-9% of Lupus patients

...it is also applicable to many people that have my rare disease, lymphangioleiomyomatosis.

About Early Diagnosis Campaign Manager Jessica Armstrong

Jessica Armstrong is the Early Diagnosis Campaign Manager for the Pulmonary Hypertension Association

In 2011, Jessica Armstrong was serving in Afghanistan when she suddenly became unable to breathe and collapsed. Four months later she was diagnosed with Chronic Thromboembolic Pulmonary Hypertension and told that, unless she underwent a dramatic 10-hour open-heart surgical procedure, she wouldn’t live beyond the next five months.

After she received that life-saving surgery, a cousin of Jessica's died of undiagnosed and untreated PH. This traumatic event caused Jessica to re-evaluate and dedicate her life to helping others with this deadly condition, to survive and thrive as she has.

Today Jessica serves as manager of the Pulmonary Hypertension Association’s Early Diagnosis Campaign and advocates for patients with pulmonary hypertension and other rare diseases.