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'You are NOT disabled!': Teenager, 19, with hidden illness slams 'judgmental' anonymous driver
A teenager with a life limiting disorder has hit back at a 'judgmental' person who accused her of not actually being disabled. Yasmin Swift, from Ashford, Kent, has a serious lung disorder which severely limits her quality of life. After being diagnosed around seven months ago with idiopathic pulmonary arterial hypertension, the 19-year-old hairdresser has faced a daily battle, struggling to do the simplest of tasks without becoming out of …
PHinding Your Hope: A Four Day Breakdown of PHA’s 2018 International Conference
PHA Canada Ambassador and Fondation HTAPQ Board Member, Judith Moatti, shares some of her experience attending the 2018 PHA International Conference. Judith Moatti lives in Montreal, Québec. She was first diagnosed with Pulmonary Arterial Hypertension (PAH) in 2009, and has since become a PAH-Spokesperson, a support group leader for patients living or affected by PH in her region, as well as a patient representative for HTAPQ. In July of 2018, Ju…
You can help create a national Pharmacare program that works for rare disease communities
Did you know that the federal government is currently looking to develop a national drug plan? And did you know that you now have the opportunity to join the conversation and help make a difference? Access to prescription drugs in Canada is currently provided through a mix of privately purchased and publicly funded drug programs that vary from province to province. This means drug access and pricing depend on the type of insurance you have, and …
Where the Purple Saxifrage Blooms: My Arctic Shoreline Encounters with PH
While every PHighter’s journey is unique, certain patients’ stories stand out as particularly exceptional. Living in Kugluktuk, Nunavut, an Inuit community of 1,500 bordering the Arctic Ocean, Millie Kuliktana has overcome many challenges that accompany life with PH in one of Canada’s most northern communities.
Cancer Marker NEDD9 Could Be a Therapeutic Target for PAH, Study Suggests
A cancer marker called NEDD9 is a critical mediator of pulmonary arterial hypertension (PAH) and could be a therapeutic target, according to new research. The study, “NEDD9 targets COL3A1 to promote endothelial fibrosis and pulmonary arterial hypertension,” was published in the journal Science Translational Medicine. Fibrosis (scarring) is an important source of damage in lung arteries of patients with PAH, resulting in an increased effort …
Age-Obesity Interaction in Pulmonary Arterial Hypertension
No correlation between obesity and mortality in individuals with pulmonary arterial hypertension (PAH) was observed; however, the interaction of age and obesity with respect to survival showed an increased risk for mortality in young adults who were morbidly obese, according to a study published in CHEST. Data were drawn from the French Pulmonary Hypertension Registry, and a cohort of 1255 incident participants were characterized with idiopath…
PAH in Systemic Sclerosis Increases Risk for Early Mortality
In patients with systemic sclerosis (SSc)-associated pulmonary arterial hypertension (PAH), approximately 50% of deaths are PAH related, according to an article published in CHEST. Risk factors for mortality include male sex, diffuse disease, systolic pulmonary artery pressure (PAP) on echocardiogram, mean PAP on right heart catheterization (RHC), 6-minute walk distance (6MWD), and diffusing capacity for carbon monoxide (DLCO).
85 per cent of Canadians now have publicly funded access to a potentially life-extending treatment for patients with rare lung disease
Vancouver, BC/Hamilton, ON (Tuesday, June 12, 2018) – The Pulmonary Hypertension Association of Canada (PHA Canada) and Scleroderma Canada join together in praising the Alberta, Saskatchewan, Manitoba, Ontario and Newfoundland and Labrador governments for following Quebec’s lead by providing public funding for Uptravi (selexipag) for the treatment of pulmonary arterial hypertension (PAH). This action stems from the conclusion of pricing negotiati…
Canada Trails US in Patient Access to Rare Disease Therapies, CORD President Says
Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing the nearly three million Canadians with rare diseases.” So says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), a Toronto-based network representing 102 patient advocacy groups.
Scleroderma and PAH
Scleroderma is a progressive chronic disease that causes hardening and thickening of the skin and internal organs. Scleroderma is an autoimmune disease, meaning that the body’s immune system attacks its own tissues, resulting in inflammation and damage. In scleroderma, the body produces an excess amount of collagen (a type of protein), which can lead to scarring of the skin, tissues under the skin (including muscles and bones), and internal organ…
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