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phantom ph, gaming, weather, identity, gifts, laughter

“Why can’t she just get over it?” It would not surprise me if there were people asking themselves this question about me.

Since receiving a heart and double-lung transplant six years ago, my son Cullen no longer has pulmonary hypertension (PH). Despite this dramatic change, I continue to advocate for PH, and I have even made a career out of it. As a forum moderator and columnist for Pulmonary Hypertension News, it is my job to discuss and write about PH every week.

There have been days when I have questioned why I didn’t leave PH behind with Cullen’s diseased heart and lungs. Then I learned that March 9 is “National Get Over It Day.” According to the holiday website National Today, National Get Over It Day is when people are encouraged to self-reflect and move on from whatever is weighing on them. read more

ECG monitoring device

VivaLNK’s wireless device can now be used to capture changes in heart rate and electrical activity in people with pulmonary hypertension (PH) or other disorders during the six-minute walk test (6MWT), a routine exercise endurance test.

This wearable electrocardiography (ECG) monitor allows for in-clinic and remote patient monitoring, meaning that it may potentially lower the need for hospital visits, reducing the burden of disease monitoring for both patients and physicians.

“Medical wearables are making it possible to explore new, potentially meaningful outcomes in clinical studies without adding much additional burden to patients or their clinicians,” Robert F. Roscigno, PhD, vice president of clinical development at Gossamer Bio, said in a press release. read more

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs.

At age 9, a stroke due to his disease left him paralyzed on the left side. He had to re-learn how to walk, talk, and use the bathroom.

Lee found the stroke to be both a curse and a blessing. While friends were making fun of him because of his differences, the newfound and unwanted attention led him to pursue acting — which eventually turned him to modeling, designing clothes, and walking the runway. read more

TPIP Phase 1 trial

Top-line data from a Phase 1 clinical trial has found that treprostinil palmitil inhalation powder (TPIP) — a dry powder form of a treprostinil precursor that is being developed by Insmed for treating pulmonary arterial hypertension (PAH) — was safe and well-tolerated in healthy volunteers.

Results also showed that TPIP had a favorable pharmacological profile that allows for the medication to be given once daily.

TPIP achieved lower maximum concentrations in the blood of healthy volunteers and remained in circulation for a longer period of time than Tyvaso, an inhaled form of treprostinil marketed by United Therapeutics that is approved to treat PAH. According to Insmed, this means that TPIP may be a safer, more effective and convenient alternative to Tyvaso. read more

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool.

The free, virtual event runs from 10:30 a.m. to 5:30 p.m. EST, and is held in observance of Rare Disease Day, which works to raise awareness of the roughly known 7,000 rare diseases, and the hundreds of millions of people believed to be living with them. Visit this site to register in advance. read more

phantom ph, gaming, weather, identity, gifts, laughter

The Mayo Clinic describes phantom pain as pain that feels like it’s coming from a body part that’s no longer there. Experts believe these sensations can be real and originate in the spinal cord and brain.

But depending on the experience, it can also be diagnosed as a psychological phenomenon. This resembles what my son Cullen has experienced following his heart and double-lung transplant. His diseased organs were replaced with healthy ones, so they aren’t the issue. It’s what Cullen came out of surgery without that still haunts him. Cullen has dealt with what we refer to as phantom pulmonary hypertension (PH). read more

Alembic Pharmaceuticals, generic Remodulin

The U.S. Food and Drug Administration (FDA) has approved Alembic Pharmaceuticals’ injectable formulation of treprostinil, a generic version of Remodulin, to treat patients with pulmonary arterial hypertension (PAH), the company announced.

Like the branded product, this generic version of United Therapeutics’ treprostinil will be available in multiple-dose vials containing four different concentrations  — 1.0, 2.5, 5.0, and 10 mg/mL — of the medication’s active ingredient. read more

Remunity pump for PAH

Remunity, an innovative pump for Remodulin (treprostinil) to treat adults with pulmonary arterial hypertension (PAH), has launched commercial sales, according to the device’s developer, United Therapeutics.

The Remunity system allows constant subcutaneous (under-the-skin) delivery of Remodulin (treprostinil). The therapy mimics the effects of prostacyclin, a natural vasodilator that helps blood vessels widen, improving blood flow and preventing blockage in arteries.

“We are excited to bring to market the first subcutaneous pump designed specifically for PAH patients,” Beth Rhodes, vice president of global supply chain and alliance management at United Therapeutics, said in a press release. read more

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe.

Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5, the survey results show.

The survey identified three “priority” healthcare areas for improvement: follow-up consultations, guidance on resources and support, and psychological assistance. read more

interview, less is more, unique, covid-19

Sixteen years ago, I was lying in a hospital bed, unsure just how much my life and my family’s lives were about to be turned upside down.

As a nurse, I thought I could be “fixed” and sent home. That was far from my reality. Who would care for my family if I couldn’t? My daughter, KK, was only 12 at the time. What about my patients? 

From the beginning, the initial shock sent my family into fight-or-flight mode. We continued to thrive despite the “death sentence” I had been given. My diagnosis was pulmonary hypertension (PH), something unfamiliar to me at the time.  read more

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