Topics in Focus: ALS, CAR T Therapies, Macular Degeneration and Movement Disorders
The HealthWell Foundation is proud to be a founding sponsor of Real World Health Care. Since 2013, Real World Health Care (RWHC) has brought you compelling content on health care issues facing Americans. From features on the people, programs and products changing the way health care is delivered, to interviews with leading researchers and clinicians, to profiles of patient advocacy organizations, RWHC has provided valuable insights and information to those interested in both the current state and future of health care.
This year, RWHC will focus on several chronic diseases of concern to Americans: amyotrophic lateral sclerosis (ALS, commonly called Lou Gehrig’s disease), macular degeneration, and movement disorders including Parkinson’s Disease, Huntington’s Disease, and Tourette. We also will delve into CAR T therapies, which hold promise for changing the lives of countless cancer patients.
As in previous RWHC series, we will be shining a spotlight on organizations and individuals who are dedicated to supporting patients and championing the research needed to improve health outcomes.
An Inside Look at Patient Communities
What is ALS?
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It progressively affects voluntary muscle action, leading to the potential of total paralysis in patients at the later stages of the disease. ALS usually strikes people between the ages of 40 and 70, and it is estimated that at least 16,000 Americans have the disease at any given time, with more than 5,000 people newly diagnosed each year.
What is Macular Degeneration?
Macular Degeneration is an incurable eye disease that is the leading cause of vision loss, affecting more than 10 million Americans. When the disease progresses, people experience wavy or blurred vision, and if the condition continues to worsen, central vision may be completely lost. People with very advanced macular degeneration are considered legally blind.
What are Movement Disorders?
Movement disorders are a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. They can also cause reduced or slow movements. There are several types of movement disorders, including (but not limited to):
- Chorea: characterized by repetitive, brief, irregular, somewhat rapid involuntary movements that typically involve the face, mouth, trunk and limbs.
- Huntington’s Disease: an inherited progressive, neurodegenerative disorder that causes uncontrolled movements (chorea), impaired cognitive abilities and psychiatric conditions.
- Parkinson’s Disease: a slowly progressive, neurodegenerative disorder that causes tremor, stiffness, slow decreased movement or imbalance. It may also cause other nonmovement symptoms.
- Tardive Dyskinesia: a neurological condition caused by long-term use of certain drugs used to treat psychiatric conditions. It causes repetitive and involuntary movements such as grimacing, eye blinking and other movements.
- Tourette Syndrome: a neurological condition that starts between childhood and teenage years and is associated with repetitive movements (motor tics) and vocal sounds (vocal tics).
CAR T Therapies
One of the newest cancer treatments available to patients today is CAR T-cell (Chimeric Antigen Receptor T cell) therapy. CAR T-cell therapy uses a patient’s own cells and re-engineers them to fight cancer. It is a complex and costly treatment that is only offered at some major cancer centers and often causes very severe side effects. Most patients treated with this personalized immunotherapy have been people with blood cancers.
Subscribe to Real World Health Care
Conditions like ALS, macular degeneration, movement disorders and cancer can have a significant impact on patients, their families, friends and entire communities. Real World Health Care seeks to be a source of information and inspiration for everyone touched by these chronic and life-altering illnesses.
I invite you to become part of our community and support patients in need by following RWHC as we cover these topics throughout 2020. Click the Subscribe button on the right side of this page to be notified when new posts publish. You can also follow us on Twitter @RWHCblog.
We want to hear from you! If you are a patient or are working with an organization that supports these patient communities, please let us know. We would be delighted to share your story with our subscribers. Contact us today.
Resources and References:
American Macular Degeneration Foundation
Cancer Support Community
Editor’s Note: Real World Health Care is pleased to close out our 2019 series on migraine by sharing an article originally published by the National Headache Foundation. Here, they share advice for helping patients respond to caregivers and others when faced with stigma associated with migraine disease. You can read the original article here, and learn more about migraines from the National Headache Foundation blog.
It can be difficult to explain the excruciating pain of a migraine to those who don’t experience it. In fact, there’s a stigma attached to this disorder stemming from a lack of knowledge on the severity of symptoms associated with migraine and headache. Migraine is not just a headache, and the attack may include nausea, vomiting and sensitivity to light and sound. Anyone who experiences migraine attacks has surely been frustrated with well-meaning friends and family offering dismissive advice that’s not only unhelpful but can make the situation worse.
We took to social media to discover the most common comments and advice that people with migraine hear when they discuss their condition. We compiled the 10 most common in a list below.
- Take some Advil
- Did you take something?
- Have you been drinking enough water?
- You’ve got another headache?
- I get bad headaches too.
- It’s just a headache.
- I have some Tylenol if you want it.
- Just push through it!
- I think you just want an excuse.
Chances are, you’ve heard one or more of these pieces of “advice” at some point in your life. One comment in particular—“It’s just a headache”—encapsulates the popular misconception about a disorder that affects around 40 million Americans. It’s frustrating to feel that no one understands what you’re going through, and some, out of their own lack of knowledge, may even think you’re faking symptoms.
In order to demystify the stigma surrounding migraine disease, here are a few steps you can take to educate those around you about this debilitating neurological disorder.
Explain the Migraine Triggers
While migraine triggers differ from person to person, there are a few common causes that will bring about symptoms in many sufferers. For example, a naturally-occurring compound called Tyramine—often found in aged, smoked or cured meats and vegetables—has been found to be a major trigger of migraine attacks. If friends, family and coworkers have a better understanding of your migraine triggers, they’re more likely to notice when you’re experiencing an attack and can respond accordingly.
Provide Migraine Resources
Of course, you don’t need to justify your condition to everyone with whom you interact, but migraine symptoms can cause a strain on certain close relationships. For example, a boss or supervisor doubting the severity of your condition may cause you additional stress, which can negatively impact work performance or compound the pain. Fortunately, the National Headache Foundation has an abundance of resources that help skeptics and allies alike get a better understanding of migraine and headache. Sharing these informative sources with those closest to you can help alleviate the burden of constantly explaining your condition.
Seek Migraine Treatment from a Headache Specialist
Understanding the specifics of your condition makes it far easier to explain them to others. Seek out a headache specialist to receive an appropriate diagnosis. The health care practitioner will likely diagnose you based on your medical history, symptoms and a physical and neurological examination. This could include blood tests, magnetic resonance imaging (MRI) or computerized tomography (CT) scan. (It is critical to visit a medical professional who specializes in headache and migraine, as they will be able to best diagnose and treat the pain.)
There will always be those who doubt the severity of migraine symptoms. However, by educating yourself and those around you, you can help tear down the stigma associated with migraine disease and, in the process, make living with migraine attacks a bit easier.