News

fungus in Chinese medicine study

Treatment with a fungus called Ophiocordyceps sinensis eased disease signs and improved survival in a rat model of pulmonary arterial hypertension (PAH), suggesting a potential to treat patients.

The findings were in the study “Substantial involvement of TRPM7 inhibition in the therapeutic effect of Ophiocordyceps sinensis on pulmonary hypertension,” published in Translational Research.

Ophiocordyceps sinensis, abbreviated OCS, is an entomopathogenic fungus — a type of fungus that can cause disease in certain kinds of arthropods (e.g., insects and crustaceans). OCS is used in traditional Chinese medicine to treat conditions including liver inflammation, high blood pressure, and cancer. Recent research has shown that OCS can lessen fibrosis (scarring) and inflammation in various animal models of disease. read more

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education.

For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each worth $5,000, to cover a winning applicant’s undergraduate, graduate, or trade schooling costs. In the U.S., a rare disease is defined as one affecting fewer than 200,000 residents. read more

levosimendan

Treatment with the investigational medication levosimendan was found to improve exercise tolerance, and some parameters related to heart function, in a small clinical trial of people with pulmonary hypertension and heart failure with preserved ejection fraction — a condition known as PH-HFpEF.

In fact, 84% of patients in the trial’s initial lead-in phase responded to levosimendan based on prespecified criteria, according to Tenax Therapeutics, the company developing levosimendan in North America. read more

marriage, transplant, wise, phantom ph, gaming, weather, identity, gifts, laughter

I view marriage in a very spiritual and traditional way. It is one of the seven sacraments of my Catholic faith, and legally, it unites two people as partners in a personal relationship. To me, the vows are sacred, and as I mentioned in a previous column, they are sometimes tested beyond what a couple could ever imagine, which has been the case for me and my husband, Brian. 

Brian and Colleen on their wedding day, May 6, 1995. (Courtesy of Colleen Steele)

In May, we will celebrate 26 years of marriage. Our greatest blessings have been our two sons, Cullen and Aidan. Our greatest challenge has been our vow “to have and to hold … in sickness and in health,” but it has also been what has united us the most. What was unexpected is that it wasn’t our health that declined but that of our oldest child, Cullen. read more

risk assessment

More than three-quarters (76%) of adults with pulmonary arterial hypertension (PAH) being treated with Uptravi (selexipag) either saw no increase or a decline in their risk of death over one year, a study based real-world data reports.

These findings — in nearly 500 people taking part in an ongoing registry, with most determined at entry to have an intermediate or high one-year mortality risk — underscore the importance of risk assessments in determining treatment goals for PAH patients, its researchers said. read more

body image, happiness, sex, comeback, risk, kindness, reflection, self-worth, trauma, numbers, body acceptance

“Don’t mind the pacemaker on the left side of my chest — it sticks out. I hope you’re not grossed out by the port because you can see the tunneling of the line under the skin. I’m sorry about that.” 

In an attempt at an intimate moment, I caught myself apologizing. I apologize for parts of my body that bother me the most. The parts that pain me to see when I look at myself in the mirror.

Lacking self-confidence, feeling the need to say “I’m sorry” for my outward appearance, and pointing out my imperfections have made intimacy a struggle. It’s important to remind myself to stop apologizing for my body and start connecting to it.  read more

PH-COPD study

Patients whose pulmonary hypertension is associated with chronic obstructive pulmonary disease (PH-COPD) have a worse clinical status and a poorer outcome than those with idiopathic pulmonary arterial hypertension (IPAH), a study based on real-world data from the COMPERA registry reports.

Although PH is typically mild to moderate in COPD, some patients develop severe PH. According to the study, targeted PAH therapies might improve the clinical status of this particular group of patients. read more

workplace, fear, interview, less is more, unique, covid-19

The last five months have been bumpy for my family. Back in November, my husband, Manny, and I both got COVID-19. I was hospitalized for several weeks and not expected to come home. My recovery continues, but I am grateful for the progress I have made. 

BioNews, the parent company of this website, has been a supportive and empathetic workplace during this time. Members of the BioNews team are more like family, and most have been affected by a rare disease.

If you have a chronic condition and are thinking about work, imagine what a company can be, then envision and pursue the workplace you deserve. read more

sotatercept trial updates

Treatment with Acceleron Pharma’s sotatercept appears to be effective and generally well tolerated in people with pulmonary arterial hypertension (PAH), according to new data from the ongoing PULSAR and SPECTRA Phase 2 clinical trials.

These data will be presented at the American Thoracic Society (ATS) 2021 International Conference to be held virtually on May 14–19.

“It’s quite gratifying to return to the ATS International Conference with new sotatercept data, having first presented topline results from the PULSAR trial during a special breaking news session at ATS 2020 Virtual,” Habib Dable, president and CEO of Acceleron, said in a press release. read more

denial, slowing down, work, exercise, making time count, therapy

The ongoing pandemic means my normal schedule of hospital appointments has been disrupted for more than a year. 

I have previously written that this makes me increasingly anxious about my physical health. Although I’ve had telephone check-ins with my doctors, it is strange that I haven’t had any of my regular medical tests for such a long period of time. 

I worry that any physical deterioration is more likely to go undetected. But not having appointments or time in the hospital has also been challenging, as it has allowed me to fall into a bit of denial. read more

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