Hassel Free Living

Posts Tagged ‘care’

http://www.clinuvel.com/skin-conditions/rare-skin-conditions/erythropoietic-protoporphyria

Adrian was diagnosed with the genetic disease Erythropoietic Protoporphyria (EPP) when he was 5. Exposure to light causes him excruciating pain. He has absolute light intolerance.

EPP is characterised by the accumulation of toxic compounds in the body of patients. Exposing an EPP patients skin to light, particularly blue light, causes excruciating pain: intense burning, stinging heat. Adrian describes EPP as similar to having badly sunburnt skin scrubbed with a wire brush. Swelling and blistering can also form after extended time exposure. Even artificial lights, such as those in supermarkets and laptop screens can cause acute pain.

EPP is a lifelong disorder presenting in early childhood. The onset of the disease is traumatic for both children and parents.

Sun avoidance is the mainstay of treatment for EPP: patients are often forced to remain indoors, severely affecting their quality of life. Eventually a nocturnal existence is the only way of life for many porphyria patients.

Currently, there is no proven effective treatment or prevention method for EPP.

View this video with German subtitles:

View this video with Hebrew subtitles:

For more information on EPP visit:

http://www.clinuvel.com/

http://www.scenesse.com/

Duration : 0:7:53

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Some terminally ill patients who receive palliative care live longer and with a better quality of life than those who receive standard medical care.

Researchers at Harvard Medical School evaluated the life expectancy and quality of life of roughly 150 patients with terminal lung cancers. Patients were asked questions about their mood and their quality of life at the start of the study and again after 12 weeks of treatments.

Patients receiving palliative care, which focuses on treating pain, anxiety and loss of appetite, reported a 50% lower rate of depression than non-palliative patients. They also lived an average of 2.5 months longer. The study appears in the the New England Journal of Medicine.

Death an dying is not something people want to talk about. Even when loved ones have spelled out their wishes we often subject them to unnecessary medical treatment that does little good.

Wouldn’t you rather have a few more months with a loved one who was lucid and living a quality life to their last day. Consider these options and talk to your family members about them.

Duration : 0:1:15

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http://www.advisoryboardcompany.com/

Uncovering the Value for Patients, Hospitals, and Physicians Alike

Analysis from Lindsay Conway, Senior Consultant, Oncology Roundtable

Lindsay Conway explains the growing interest around palliative care and the potential benefits for a variety of stakeholders — including increased quality of life for patients, cost reduction for hospitals, and streamlined team-based care for physicians.

Health Care Advisory Board members can e‑mail BreenT@advisory.com regarding questions about current and past strategy and operations research. Viewers with questions about the Oncology Roundtable or the content of this video can e‑mail VideoInquiries@advisory.com.

Duration : 0:2:19

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SCENESSE® (afamelanotide) holds promise as a preventative pharmaceutical treatment, improving quality of life for patients with advanced stage bile duct cancer, who are eligible to undergo Photodynamic Therapy (PDT).

Clinuvel is committed to caring for patients who do not receive medical attention for light and UV related diseases. We believe strongly in prevention and we are aware of the importance of quality of life.

In 1993 the US NCI provided the seed funding to research a molecule for the prevention of skin cancer. Clinuvel spent 9 years to commercially develop this molecule into a viable preventative product to treat severe light and UV related skin disorders.

Through study of preventative applications we have uncovered afamelanotide’s potential as a treatment for cancer patients undergoing PDT.

In PDT, similar phototoxic reactions are observed in patients, as the skin reactions seen in Erythropoietic Protoporphyria (EPP). EPP is one of the foci of Clinuvel Pharmaceuticals.

For more information on SCENESSE® (afamelanotide) visit:

http://www.clinuvel.com/

http://www.scenesse.com/

Duration : 0:2:47

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Boulder Network Chiropractor Dr Daniel Knowles workshop clip. This Clip is from our demonstrating the network wave workshop. Network Spinal Analysis care is an advanced from of chiropractic wellness care focused on increasing spinal and neural integrity and quality of life.

Duration : 0:9:39

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