Articles & Stories

If your child has sickle cell disease, you know the heart ache of watching a child in pain and unable to enjoy the simple joys of childhood. There is a way to help your child feel better and live as well as possible: ask for palliative care.

Palliative care is specialized medical treatment for people living with serious illness like sickle cell. It treats the pain, symptoms and stress of the illness, with a focus on quality of life. Palliative care is provided by a team of doctors, nurses, social workers and other therapists who work closely with your other doctors to give you an added layer of support, based on your needs and what’s important to you. It can be provided at the same time as all other treatments to help you feel as well as possible and live your life. If you, or your child has sickle cell disease – ask for a palliative care consultation. The earlier the better.

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If you have chronic kidney disease, you know that managing your symptoms and keeping to your treatment plan is hard on you and your family. Palliative care can help you cope by giving you an added layer of support.

Palliative care is specialized medical care for people living with serious illnesses like kidney disease. The goal is to improve quality of life for both you and your family by treating the symptoms and stress of the disease. Palliative care is provided by a team of palliative care doctors, nurses and other specialists who work closely with your other doctors. It is appropriate at any age and any stage of your illness, and it can be given alongside all your other treatments.

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Cathy, 62, has always loved jogging and doing step aerobics, but her true passion is tending to the flowers in her garden.

“I just love being outside and getting my hands in the dirt,” says Cathy, born and raised in Dayton, Ohio.

Cathy will be the first to tell you that gardening takes both patience and the willingness to start anew when a flower doesn’t grow like she’d hoped. “It’s okay when something doesn’t go your way out there. It’s all about adapting and moving forward,” says Cathy.

Cathy has had to apply those same principles to her own life as well. A diagnosis of stage IV breast cancer in 2012—the second time she had been diagnosed with this illness—halted her active and productive life. She faced an uphill climb of difficult chemotherapy regiments and an uncertain future.

After dealing with painful symptoms from the chemotherapy and the stress of managing the ups and downs of her battle for over four years, she asked for better care from her medical professionals. She was referred to palliative care who now work every day to get her back to her active life.

This is Cathy’s story.

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Matt is about to start another abstract painting. With classic rock music blasting in the background, he holds the brush between his lips, steadies his neck and presses the brush against the canvas.

A few months ago, Matt, 38, wouldn’t have believed you if you told him he’d be painting again. Fourteen years ago, a severe car accident left him paralyzed from the upper chest down. While his diaphragm wasn’t paralyzed in the accident, it was weakened significantly, which has caused Matt to have breathing problems that have grown progressively worse over time. Those issues coupled with severe nerve pain and the emotional stress of dealing with the traumatic events of the accident have been a daily struggle.

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Life with heart failure can be a difficult journey. Your symptoms may get in the way of day-to-day activities, your family members may worry about how to take care of you, and you may be unsure about what to expect and how to plan for your future. Palliative care can help make that journey easier on you and your family, so you can live as well as possible.

Palliative care is specialized medical care that is focused on improving quality of life for people living with serious illness, and their families. It provides an extra layer of support to control your pain and symptoms, and to coordinate your care. Your palliative care team will work closely with your heart doctor and any other doctors who are treating you to make sure your treatment plan is right for you. … Read More

Gregory has never been much of a runner. When it comes to exercise, he’s always preferred hiking. But tomorrow, along with his wife and two young children, he’s going to attempt to run his first 5K. For any of us who don’t run very often, a race like this would seem like a challenge in and of itself. But for Gregory—who has been living with stage IV metastatic non-small cell lung cancer for a little over a year now—it’s much more than that.

“If you had asked me back then if I ever thought I’d be here preparing to run a race, I wouldn’t have believed you,” says Gregory from his home outside Atlanta.

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For 50 years—three years of courtship and 47 years of marriage—Barbara and Laren of Atlanta have always struck the perfect balance. Barbara, the retired nurse and eternal optimist, is a bubbly dreamer who loves spending her free time in her garden so she can “hold mother nature’s hand.” Laren, the scientist and down-to-earth realist, is guided by practicality and a strict adherence to facts and numbers. Yet ever since the two met riding bikes while in college, they’ve been inseparable.

“We are very different people but it’s always just worked for us,” says Barbara. “Laren is the calm and patient one,” she adds through laughter.

Barbara has always been her family’s rock. While raising four highly-accomplished children or helping Laren deal with the struggles of his heart condition, Barbara has always been there standing strong. But more than two years ago, Barbara was diagnosed with pancreatic cancer, and seemingly out of nowhere, the couple’s lives flipped upside down.

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Looking for palliative care in your area? Here’s good news: GetPalliativeCare.org has just launched its new, expanded Palliative Care Provider Directory for patients with serious illness, their families, friends and caregivers. The new Provider Directory is specifically designed for users to identify and locate palliative care providers in their area, quickly and easily, in both hospital and community-based settings.

Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

Because of the growth, availability of, and demand for palliative care services beyond the hospital, the new Palliative Care Provider Directory lets users search for palliative care based on the setting where they can get the care: Hospital, Home, Nursing Home and Office/Clinic.

Along with the Provider Directory, the website has also been refreshed and relaunched. GetPalliativeCare.org is now easier to navigate and provides improved features such as webinars, briefings and multimedia presentations.

The Palliative Care Provider Directory is available at GetPalliativeCare.Org, CAPC’s online resource for patients and families. The website focuses solely on providing information on palliative care from the point of diagnosis.

When your loved ones are living with a serious illness, you won’t let them tackle the obstacles alone. Their struggles are your struggles. Their pain is your pain. Their fears are your fears. You listen to them, care for them, and walk their disease journey with them. You’re their rock on the days when everything seems too difficult to handle. You’re there to help them in any way you can.

But who helps you?

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Many patients facing serious illness say that some of the most difficult things to deal with are pain, stress and a loss of control. This is because an illness like cancer, COPD, kidney disease or ALS can make an independent person feel helpless for the first time in their lives.

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