Tuesday, November 16, 2010

I have Pulmonary Hypertension

I have pulmonary hypertension ~ pulmonary hypertension does not have me.

Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases.

Symptoms range in severity and a given patient may not have all of the symptoms. PH may be secondary to COPD, HIV or Raynaud’s Phenomenon, Sleep Apnea, Scleroderma or even Lupus. There are several other contributing diseases that can cause PH or there can be no known cause. Untreated, however, PH has a worse prognosis than many forms of cancer. Did you know lung disease is the fourth leading cause of death in the U.S., responsible for one of every seven deaths?


MyLittleCornerOfTheWorld said...

Your site was the first one I came across and helped me so much. I thank you for sharing my reports with the doctors at your meeting. Hopefully I can find someone nearby who can help me find some relief. God bless. I hope those who need to read this post will "stumble" across it.

Unknown said...

It's my hope that this note has found you grinning so large a Cheshire cat would be green with envy.

I am reaching out to you hoping that you will lend your support and the power of your network to the following campaign, which benefits the Pulmonary Hypertension Association's mission to find a cure.

My Lady, diagnosed with PH in March of 2013, was recently the subject of an article titled, The Challenges of Chloe Temtchine for the Huffington Post. Here's a link: http://www.huffingtonpost.com/annette-insdorf/chloe-temtchine_b_4246594.html

Additionally, we just began a video campaign in collaboration with the PHA. This is the first video: http://bit.ly/Mcn4ch

On March 10th she will be the subject of Caring Voice Coalition's magazine monthly issue.

On March 29th, she will be performing for more then 3000 people directly afflicted directly or indirectly by PH.

Thereafter, she will be the subject of Pathlight, the quarterly issue of the Pulmonary Hypertension Association as well as a performance at the International Conference in June.

It's my intention to align with all those speaking about PH online and leverage their network to help us shine a light on this campaign, which will raise the much needed awareness for PH.

Kindest regards and...

May Your Life Be Extraordinary,

Marvin V Acuna