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.
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
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.
Learn more about Jessica’s story – its well worth the read.
Connect with the Pulmonary Hypertension Association: Click Here
Instagram: Click Here for PH Association, Here for Jessica
Connect with Jessica on LinkedIn: Click Here
(NOTE: This episode was recorded with the idea that it would appear on a new podcast, Smart Health 101. However, as November is Pulmonary Hypertension Awareness Month and I wanted to get this episode out as quickly as possible, I’ve also shared it with you!)