chronic conditions – Oscar Hancock

My Cancer Turned Out to Be a Rare Disease

As told to Jacquelyne Froeber

“I’ve never seen anything as invasive as this in my life,” my surgeon said.

I was still groggy from the anesthesia, but the look on his face meant what I heard was true. Apparently, I was in surgery for six hours — not two — and whatever was growing in my ear was also in the layers of tissue protecting my brain.

“It looks like cancer,” he said.

Shock doesn’t even begin to describe what I felt at that moment. I went in for an ear infection. Now I have brain cancer?

It all started innocently enough. In January 2011, my right ear was full of pressure and everything sounded muffled, like I was underwater. But I didn’t think it was too serious. January was actually a really happy and exciting time. It was the month my first granddaughter was born, and I couldn’t think of a better way to start the new year.

I was diagnosed with a mild ear infection, so I took antibiotics but they didn’t help. Nothing did. I was eventually referred to an ear, nose and throat (ENT) specialist, but it took months to get an appointment. When I finally got in to see the specialist, I had a scan of my ear. The imaging showed that there was a mass, so they did a biopsy right away.

It was after the biopsy surgery that I learned that the mass was also in my brain and probably cancerous. But the pathology report came back negative. “How is that possible?” I asked. My provider was stumped. He said the tumors acted like cancer, so we were going to treat it like cancer — very aggressively.

I had surgery to remove the tumors — and that surgery was a success — but six weeks later, the mass was back. And two weeks after that, another mass was growing in the left side of my head. It took five surgeries to remove that one.

We still didn’t have confirmation that the tumors were cancer, but I started radiation to try to stop them from growing. I’m a radiologic technologist by trade, so I understood the effects of radiation treatments — but I didn’t know how terrible the side effects were going to be for me. The treatments left me weak and drained of all my energy. I was also having debilitating headache attacks that felt like a sledgehammer to the skull.

On top of everything, the radiation wasn’t working. And at that point, the mass had damaged the hearing structures in my right ear, and I needed surgery for a cochlear implant.

(Photo/Courtesy of Sabrina Riddle)

By November 2013, I was worn down. Exhausted. Depressed and unable to hear out of my right ear. With my granddaughter’s second birthday approaching, I could only think one thing: I’ve been in this fight for two years and here comes another year I’m going to have to deal with whatever this undiagnosed thing is.

I’d seen many specialists in effort to get a diagnosis and treatment plan. But one particular rheumatologist was curious enough to order a spinal tap. When the results of the spinal tap came in, she said, “I think I know what you have, but I can’t diagnose you. I need you to go to Massachusetts to see the leading researcher for this disease.”

She didn’t have to tell me twice. I packed my bags and met with the specialist the next week. His name was Dr. Stone, and he told me I had immunoglobulin G4-related disease (IgG4-RD) — an extremely rare inflammatory disease. He explained to me that IgG4-RD causes tumors to form in different parts of your body and it looks and behaves just like cancer because it’s so aggressive — but it’s not cancer.

I sobbed with relief right there in his office — I finally had a diagnosis. But I was also crying for the past three years of my life. All of the surgeries, multiple hospitalizations, the boatload of steroids — and they have their own set of issues — none of it helped. I don’t fault the doctors for any of it, but I’d been through a lot. And if that was the treatment for cancer — what would treatment for a rare disease like this one be like?

Dr. Stone is known as the godfather of IgG4-RD, and he reassured me that my new treatment plan was going to work and it wasn’t as harsh as radiation. I started a biologic infusion and right away I began to see signs that the disease was going into remission. It felt like a weight was being lifted off of my life. For the first time in a long time, I felt hope for the future.

I started feeling better — I had way more energy, fewer headache attacks and visual disturbances, and improved joint pain. I even got a little cocky, thinking I was a one-and-done and I could put the disease behind me.

But that wasn’t the case. In 2015, I had a relapse. It started with blurred vision and severe headache attacks — and this time the cognitive decline was swift and shocking. I was devastated. I had the treatment infusion, and within about two months, I started to feel more like myself again. But when I relapsed again in 2017, I realized that this was probably going to be a pattern for the rest of my life.

Each time takes a toll. The effects of IgG4-RD disease on the layers of my brain (called meninges) can cut off oxygen to the brain and arteries and cause seizures, so I am really concerned with each flare because I don’t know what might happen each time it comes back.

Last November, I was on the phone with my sister and I just lost it. I felt like the disease was looming over my life, even when I was in remission. The loneliness that comes with having a rare disease adds another layer of sadness and despair. I didn’t have a single person to talk to who really knew about what was happening to me or understood that I looked OK on the outside, but I was the furthest thing from OK. I told her I wished there were more advocacy around the disease.

About a week later, I got my wish. An advocacy group called me and asked if I’d be interested in speaking at a conference about IgG4-RD. I was so shocked I nearly dropped the phone. By December, I was on a plane to the conference, and since then I’ve been working as a patient advocate for IgG4-RD.

Through my new platform, I connect with other patients with IgG4-RD, as well as caregivers and healthcare providers trying to advance treatment for the disease. Having a community has been a life changer for me. Having a rare disease is exhausting — especially one that affects your brain. But I now know that I don’t walk this road alone.

Right now, I’m going through a relapse and it’s hard. The pain is sometimes unmanageable and the heavy doses of pain medication weigh me down. But in the past year I’ve seen so much advocacy and research that makes me hopeful for the future. And sometimes all you can do is keep hope alive while you wait.

This educational resource was created with support from Amgen, a HealthyWomen Corporate Advisory Council member.

Related Articles Around the Web

Source link

Why Are Women of Color More at Risk for Lupus?

Español

As a senior at Florida A&M University, Sharon Harris had been juggling a full course load, three jobs and other demands of college life when she started to feel sick.

She visited the doctor and went to the hospital emergency room for gastrointestinal problems, and healthcare providers (HCPs) thought she might have Crohn’s disease. The medication she received didn’t help, but she powered through to make it to graduation.

When Harris’ mother came to her graduation ceremony, she asked her daughter about the butterfly-like rash on her cheeks and nose. Harris hadn’t noticed, but assumed it was related to stress. She’d ask her HCP in Detroit the next time she went home.

Once home, the provider ordered blood work, which came back positive for markers of
discoid lupus and systemic lupus erythematosus (SLE). Harris said she’ll always remember that day — February 4, 2002 — as the moment her life changed.

Read: FAQs About Lupus >>

Since then, Harris has become a local and national advocate for people with lupus, founding
Lupus Detroit and working with other organizations to support patients through physical, mental and financial difficulties related to the disease. She continues the work despite her own health struggles, including a 2015 stroke and stage 5 kidney failure.

“Lupus is a very serious autoimmune disease that can lead to other autoimmune diseases, and I’ve been diagnosed with additional ones,” Harris said. “A common problem is that there isn’t a single test that can diagnose lupus, and it’s been reported it takes patients
years to get an accurate diagnosis. That’s a long wait when a person’s hair is falling out; their joints and bones are aching; and they’re fatigued, have brain fog and have kidneys that are failing. It takes a toll on a patient’s mental health, finances, body, family life, emotions, work life and social life.”

Why are women of color more likely to get lupus?

Systemic lupus erythematosus (SLE) is the most common form of lupus, and the general term “lupus” typically refers to SLE. An autoimmune disease, lupus attacks connective tissue in the body, and it can strike every organ system.

Discoid lupus, the diagnosis Harris received, is a type of lupus called
cutaneous lupus erythematosus (CLE), known mostly for the presence of a “malar rash” or “butterfly rash” on the face. Lupus patients can have both SLE and CLE.

Women make up 9 out of 10 lupus cases, with Black/African American, Native American/Alaska Native and Asian Americans representing 4 out of 10 of the estimated SLE cases in the United States, while Hispanic and Latino patients make up 2 out of 10 cases. Black/African American women with lupus die up to 13 years younger than white women with lupus.

Dr. Joy Buie, M.D., vice president for research with the
Lupus Foundation of America, said there are multiple reasons for high rates of SLE and worse outcomes among people of color.

“When we think about
disparities in general, we have to think about social conditions and the social context in which people live,” Buie said. “We know communities of color have been disenfranchised within the United States, and specifically thinking about Black and African American women, we know those conditions have had negative implications for health. Psychosocial stressors, structural racism, financial disadvantages, economic instability and lack of educational opportunities feed into susceptibility for developing any disease.”

Buie also oversees the foundation’s health equity work, which includes research on lupus and racial health disparities. The foundation cites studies indicating how Black lupus patients were more likely to have negative experiences with healthcare systems, such as
rushed communication and lack of trust in providers, or more difficulty accessing care due to a lack of transportation or insurance or living farther away from specialists. Black people living with lupus were also more likely to lose their jobs after being diagnosed, possibly because of the severity of their disease, which made it harder for them to maintain employment.

While
1 in 5 American women have positive antinuclear antibodies, or ANA — key markers for lupus — not all will develop the disease. Buie cites epigenetics — the way your environment and behavior can affect how your genes work — as having an effect on the development of lupus among women of color.

Lack of sleep, obesity, smoking, viruses and bacteria have also been associated with increased lupus risk, and Buie said some research shows that exposure to
silica, a chemical found in the environment and used in many commercial products like skincare products and cleaners, can be a contributor.

“It’s genetics, it’s hormones, it’s the environment — the intersection of those factors all play a role in developing lupus,” Buie said. “What’s problematic with this disease is that it’s not a visible disease. It’s quite invisible. You can look at a person and not even tell they’re sick. That’s the challenge of living with a disease like lupus.”

As Harris experienced, getting a correct diagnosis can also take time because lupus can show up differently in each individual. One person might have rash and joint inflammation while someone else could have kidney and heart disease. Even after diagnosis, disease management can be challenging if patients don’t have access to the right specialists and treatments as a result of financial concerns, location or lack of education about the disease.

“There is hope”

Buie is optimistic, however, that change could be on the horizon. The Lupus Foundation of America recently launched a project to predict who might get lupus to help prevent it in others. Researchers will follow family members of people with lupus over time to see what changes occur and who eventually develops the disease. The data can then be used to identify at-risk individuals and offer lifestyle changes and treatments to help prevent the disease or stop its progression.

As for Harris, she’s worked hard to not let lupus destroy her dreams. In addition to launching Lupus Detroit, she also worked as a public relations director for the Lupus Alliance of America, Michigan Indiana Affiliate. She earned a master’s degree in public policy and hopes to write a book in the future.

Her advocacy has also taken her places she never imagined. During her tenure at the Autoimmune Association, she testified at an FDA hearing about the high cost of lupus medication. She was tickled by a brief moment of fame when she appeared in an article about rapper Snoop Dogg’s daughter, Cori Broadus, who’s also living with lupus.

“An average day for me involves getting physically stronger,” Harris said. “I use my time researching all things autoimmune disease and looking for additional resources. Just because I have a treacherous disease, it doesn’t mean I want to be complacent and rest on my laurels.”

Although Harris is waiting for a kidney transplant, her advocacy and the work of researchers could deliver a brighter future for those with lupus or those at risk.

“Know there is hope,” Buie said. “There are medications approved by the FDA in the last 20 years to treat lupus, and so many more treatments in the pipeline. There’s even conversation about opportunities for a cure. Lupus doesn’t have to be a death sentence, but the key is to get the right healthcare team in place and find ways to take control of your health.”

This educational resource was created with support from GSK, Merck and Novartis.

From Your Site Articles

Related Articles Around the Web

Source link

Continuous Glucose Monitors Go OTC

If you or someone you know has diabetes, you’ve probably heard of continuous glucose monitors (CGMs). The small circular medical devices track blood glucose (sugar) levels via a small sensor under the skin. You’ve probably seen the commercials featuring pop star Nick Jonas showing off his CGM secured to the back of his (very toned) arm.

Jonas tricep aside, CGMs have been in the spotlight lately since the FDA approved the first over-the-counter (OTC) CGM earlier this year.

The clearance is a big deal because it allows anyone over the age of 18 to purchase the CGM without a prescription. Before the new OTC options, all CGMs required a prescription and were typically prescribed to people who have diabetes and take insulin to control blood sugar levels.

The FDA said it’s expanding access to CGMs so people with Type 2 diabetes — and really anyone who wants to monitor their blood sugar levels — can do so regardless of health insurance.

Continuous glucose monitors for people with diabetes

For anyone with diabetes, access to CGMs can be life-changing. Diabetes is a disease where your body either doesn’t make enough insulin (Type 1) or doesn’t use the insulin in the right way (Type 2). People with either type can experience high blood sugar levels, which can cause serious health issues over time, including kidney and heart damage. That’s why keeping blood sugar levels within a target range (80 to 130 for the average adult) is so important.

Read: The Intersection of Heart Disease, Diabetes and Stroke >>

CGMs offer more freedom and less pain than using a standard glucose monitor. Instead of having to prick your fingers multiple times a day, the CGM sensor is inserted into your arm, typically once every two weeks, and paired with an app on your smartphone, allowing you can get your numbers right away. That can also mean less time devoted to the process of stopping whatever you’re doing to get to a sanitary place and check your blood sugar.

People with diabetes, or even prediabetes, can use a CGM to look at different health factors, including the impact of certain foods, exercise and medications.

It’s important to note that the OTC CGMs are not the same as prescription CGMs (like the one Jonas wears). The OTC monitors don’t recognize low blood sugar levels, also called hypoglycemia, which can be life threatening if not caught in enough time. If you’re worried about low blood sugar levels, talk to your healthcare provider right away.

Continuous glucose monitors for people who don’t have diabetes

People who don’t have diabetes or known blood sugar issues can use OTC CGMs to look at how food and exercise impacts glucose levels. Having the numbers may help motivate some people to make healthier lifestyle choices. However, research is ongoing regarding the health benefits CGMs may have for people who don’t have diabetes.

Some researchers have said the data can lead to people making unhealthy choices like skipping meals to stay within their target range. And there’s always the chance that the CGM may not be as accurate as you think if it’s applied incorrectly or malfunctions.

Another potential issue is the cost: OTC CGMs aren’t exactly cheap. For example, one two-week plan that includes a sensor and access to the app is $49.

You may not need a prescription for an OTC CGM, but you should talk to your healthcare provider before buying one to make sure it’s right for you and your health goals. It’s what Nick Jonas would want you to do.

Related Articles Around the Web

Source link

The Pain in My Neck Turned Out to Be Fibromyalgia

As told to Jacquelyne Froeber

I was lifting weights at the gym when I felt something rip in my neck. I wanted to scream, but the sudden burst of fiery pain took my breath away. “Don’t panic,” I told myself. It was probably just a neck strain or a pinched nerve.

I went home and put ice on it.

The fire continued to burn.

The year was 2000. We’d all survived Y2K. I was 26 years old and two finals away from surviving my first year of medical school.

I expected the pain in my neck to get better as finals week went on — but it got worse. I studied human anatomy with a ring of fire supporting my head. Then the flames started to spread down my back and continued moving south.

Somehow, I made it through finals, but there was no relief from the burning pain. It was officially time to panic.

What the hell was wrong with me?

I went to medical school in Boston so there were a lot of fancy healthcare providers and specialists to choose from. One by one, appointment after appointment, everyone said the same thing: “We don’t know what’s wrong with you.” There was nothing to see on my scans. No neck injury to speak of.

To add insult, some providers said I was imagining the pain. Others said depression was the problem. Everyone said I needed to exercise more.

I was already exercising — hence the gym injury — and I tried to do more. But fatigue had set in, and I was so tired all the time. I woke up exhausted as if I didn’t sleep at all during the night. I was also stiff and sore — like I’d run a marathon and then gotten hit by a truck on repeat.

I was running on fumes by the time school started again. I had just enough in me to study. I knew I couldn’t go into a hospital environment and work with patients when I felt so bad. So I took a medical leave of absence my third year — which was basically unheard of — but I knew I didn’t have a choice. I had to get better or give up on my dream of being a doctor.

By this time, I was desperate. I’d spent every penny I had on alternative medicine, specialists, acupuncture and herbs. Nothing helped.

Someone along the way suggested I see a chiropractor so I made a half-hearted appointment. During the exam, he pressed on a spot in my upper body and I almost fainted. “That’s so painful,” I cried out. He pressed on other areas with the same result. “I think you have fibromyalgia,” he said.

“Fibro-what?” I asked. I’d never heard that term before in medical school — or ever. It was the first time someone gave a name to the pain. It was the first time in years I had hope.

I practically sprinted to the bookstore and headed to the health section. I made my way to “F” and found one copy of “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.” I clutched the book in my hot little hands and spent the next 24 hours reading about fibromyalgia.

Everything in the book described me. I was nodding along with every line. The burning, the pain, the brain fog — it was all me. It was exciting — thrilling — to finally have some answers. It was devastating, however, when I learned that medical treatments were basically nonexistent at the time.

Back then, fibromyalgia was considered a “wastebasket diagnosis,” which meant that healthcare providers thought the symptoms were either fake or all in your head. And there wasn’t much doctors could offer as far as treatments.

Learning what the medical community thought of my condition lit a new — different — fire within me. I knew I had to get better enough so I could help other people find a better way to live.

Over the next few months, I used myself as a guinea pig and tracked the things that made me feel better. I was sensitive to dairy, so I changed my diet. I prioritized stress management and sleep hygiene.

A type of therapy called myofascial release was the pain changer for me. The technique involves stretching the tissues around the muscles that can be inflamed for people with fibromyalgia. After the first treatment, I felt a small amount of pain relief in my neck. I knew I was on to something big.

The combination of lifestyle changes and myofascial release therapy brought my pain down from a 7 to a 3. I felt good enough to go back to med school.

Even though I had an idea what the medical community thought about fibromyalgia, hearing it in person almost broke me. Early on in the school year, a teaching physician announced that fibromyalgia didn’t exist. Other colleagues said people with fibromyalgia were making it up to get disability benefits. The consensus was that people with fibromyalgia were lazy. Hopeless. A waste of “our” time.

I wanted to yell at the top of my lungs that no one had a clue what it was like to live with fibromyalgia. But I kept to myself. If this is what my colleagues thought about my condition, what would they think about me?

At the end of school, I had to do a presentation in front of all my peers, physicians and teachers. I presented a case study on fibromyalgia and revealed, at the end, that it was about me. I started weeping right there at the podium. I sobbed uncontrollably in front of hundreds of people and I couldn’t stop. For so long I’d been hiding this secret. I looked fine on the outside, but on the inside, I was going through hell.

Most importantly, I wasn’t making it up. And I wasn’t alone.

After the presentation, I was shocked at the amount of people who lined up to thank me for talking about fibromyalgia. So many people said they had family, friends or patients going through a similar situation. The reaction was so positive — it gave me hope that things could change.

2023

After school, I dedicated my career to fibromyalgia and pain conditions. Thankfully, the medical community changed and fibromyalgia is a recognized chronic condition and there are FDA-approved medications available to help treat it, along with a variety of alternative treatments that can be helpful.

The problem is that fibromyalgia is far more complex than just taking medication. Each person is different and some people really struggle to find any relief. I’m lucky in the sense that medication and lifestyle help me stay around a 2 or 3 on the pain scale. It’s manageable. And in the absence of a cure, that’s all anyone with chronic pain wants — to feel good enough to do the everyday things you have to do.

In 2016, I published the book, “The Fibromanual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor,” inspired by that desperate trip to the bookstore so many years ago. The information still holds up today, but there’s also so much new research and insight into fibromyalgia out there. It gives me hope that one day soon all of us with fibromyalgia can defeat it.

Have a Real Women, Real Stories of your own you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

From Your Site Articles

Related Articles Around the Web

Source link

Facts About Digital Therapeutics – HealthyWomen

If you’re sick of hearing about all the ways technology is bad for us, here’s some good news to consider: Prescription digital therapeutics (PDTs) are among the latest digital health products helping to increase access to quality healthcare.

PDTs and digital therapeutics in general are used to help prevent, treat and manage a range of mental and physical conditions via mobile devices like your smartphone. The difference between PDTs and other health apps is that PDTs are authorized by the Food and Drug Administration (FDA) and require a prescription from your healthcare provider (HCP).

PDTs offer unique options not traditionally seen during your typical office visit. Some PDTs provide custom treatments such as a video game for ADHD and a wearable device that uses vibrations to interrupt nightmares. Other PDTs use cognitive behavioral therapy (CBT) to help with conditions such as insomnia or irritable bowel syndrome. The evidence-based treatments backed by clinical research can be used alone or in combination with other treatments.

The current PDTs approved by the FDA apply to both mental and physical conditions. These include:

PDTs may be especially helpful for women and people assigned female at birth considering many of these health conditions affect more women than men. For example, women are nearly twice as likely to be diagnosed with depression compared to men. The latest PDT approved by the FDA in April treats major depressive disorder.

Through the app, people are asked to identify and compare emotions displayed on a series of faces as part of cognitive-emotional training. Research shows this type of therapy may help stimulate the parts of the brain involved in depression and have antidepressant effects.

Read: The Life-Changing Hope of New Treatments for Clinical Depression >>

PDTs may also be particularly beneficial for people with substance use disorder. A recent study of people with opioid use disorder, mostly women, found that those who used a PDT had significant reductions in medical care visits, including inpatient stays and trips to the emergency room.

Benefits of prescription digital therapeutics

In addition to unique treatment options, PDTs can offer benefits including:

Convenience. You can access treatment on your schedule wherever you want.
Access. People who have a difficult time getting to in-person office visits can still get the care they need.
Equality: Digitized therapies that rely on a standard, evidence-based format ensure that people who use them receive the same quality and level of care.
Privacy: PDTs offer an option for people who feel stigma or shame about their health condition.

Although PDTs can help increase access to quality care, health insurance coverage for PDTs can vary and insurance may not cover them at all. And despite the FDA stamp of approval, some experts say more research is needed before making PDTs a mainstay in the healthcare system.

If you’re interested in PDTs, talk to your HCP about your options.

From Your Site Articles

Related Articles Around the Web

Source link

The Importance of Obesity Treatment

It’s always a successful day at the office for
Fatima Cody Stanford, M.D., M.P.H.,M.P.A., when she can look at a patient’s chart, see a diagnosis of diabetes, high cholesterol or hypertension, and see progress in their health or resolution of a health concern.

Shanna Tucker, M.D., an obesity medicine specialist at NYU Langone Health, has a similar standard. If she can reduce the dosage or stop prescribing medication for one of these diseases, she knows her patient is on the right track.

When
obesity medicine specialists help patients with weight loss, their overall goal is far greater than achieving lower numbers on the scale. By treating a patient’s obesity, specialists are also helping patients manage and resolve other chronic conditions that threaten their overall health.

“Most of my patients have been with me for a decade or longer, so this is a lifetime commitment to their chronic disease that is obesity,” said Stanford, an associate professor of medicine at Massachusetts General Hospital and an obesity medicine physician-scientist. “I want to help them delete diagnoses from their chart — from their obesity itself to diseases associated with their obesity.”

Obesity can
reduce life expectancy because it generally increases the risk of other conditions and chronic diseases, including diabetes, heart disease, kidney disease and liver disease. And it can also contribute to sleep problems, joint pain, mental health issues and some cancers. It was also found to be a top risk factor for Covid-related hospitalization and death.

Growing rates of obesity have created a significant public health issue in the U.S. More than
1 in 3 adults and 1 in 5 children are living with obesity, and the U.S. spends more than $147 billion a year on obesity-related healthcare.

Tucker said many patients come to her in frustration because they’re already eating well and exercising. They’ve lost some weight, but they can’t seem to lose any more or their weight has started climbing. They’re also struggling with chronic health conditions made worse by obesity.

“Not enough medical providers may understand that sometimes additional treatment is necessary for many patients,” Tucker said.

The benefits of anti-obesity medications

Obesity medicine specialists tailor plans for patients that can include a combination of lifestyle management, medication and, in some cases, surgery.

Anti-obesity medications (AOMs) have been getting a lot of attention in the media, with many public figures attributing their weight loss to the use of these medicines. While anti-obesity medications aren’t new — the FDA first began
approving them in 1959 — the current class of GLP-1 medications like semaglutide have become household names (Ozempic/Wegovy and Mounjaro/Zepbound) for their ability to help people achieve significant weight loss.

While the weight loss achieved through GLP-1 medications makes headlines, obesity medicine specialists have a broader view of the medications’ benefits and see how they can offer quicker resolution to chronic diseases. A
meta-analysis (a review of many studies) shows that anti-obesity medications can contribute to a significant reduction in cardiovascular events, like heart attacks and strokes, and hospital admission for heart failure in people with Type 2 diabetes.

Tucker said people living with obesity don’t have to lose a lot of weight to see results. Even just a
5%–10% drop in weight can help improve high cholesterol or high blood pressure. Weight loss can also be important for quality-of-life improvements, such as allowing people to move more easily, sleep better, experience less joint pain and have more energy.

“I know a lot of people don’t want to start a new medication, but by treating obesity, I’ve had patients who’ve had a significant amount of weight loss and were able to start decreasing the dose of their diabetes medication or even stop their high blood pressure or high cholesterol medications,” Tucker said. “I say to keep the big picture in mind about the potential benefits of anti-obesity medication.”

Barriers to obesity treatment

Although effective obesity treatment can improve health outcomes and yield substantial savings for the nation’s healthcare system, many Americans don’t have access to obesity care.

Not enough healthcare providers are trained in obesity medicine, Tucker said, and the cost of the medications themselves can prevent patients from being able to get them. There’s also no guarantee that the medication will be covered by insurance or available to Medicaid and Medicare recipients.

“I think we’re really doing a disservice to these patients,” Tucker said. “They’ve already sought help and have made an appointment and come into my office. To get that far and not be able to prescribe a medication because of insurance is very disappointing.”

Since each state Medicaid plan has its own policies for obesity treatment coverage, many people don’t have access to anti-obesity medications. And, at the federal level, Medicare Part D still prohibits coverage of AOMs for most patients, even though people covered under the Veterans Affairs/Department of Defense and Federal Employee Health Benefits plans do have access to the full continuum of care for obesity. Stanford said she’s hoping the Treat and Reduce Obesity Act, first introduced in Congress in 2012 and reintroduced each session since, will become federal law to help expand coverage for Medicaid and Medicare patients.

Watch: Congressional Briefing: Ensuring Patient Access to Effective Treatments for Obesity >>

Stanford said she’s seen older adults who’ve made significant progress getting rid of chronic conditions through treatment lose all of their progress when they enroll in Medicare and can no longer afford their medication if they lose coverage for their medication.

Stanford also pointed out other disparities in who’s most likely to have access to treatment.

“The populations most likely to benefit, particularly racial and ethnic minority populations here in the U.S., are struggling to get these meds,” Stanford said. “We have to get past the idea that people just need to eat less and exercise more, which is founded not on science. I want to change that narrative. We can do better to help those who need it.”

Still, for people who are struggling with obesity and other chronic health conditions, Tucker said it’s worth talking to your healthcare provider to see if some type of obesity treatment can help.

“I know some patients may want to avoid the topic, and I can understand why for many reasons,” Tucker said. “There’s a lot of obesity bias or weight bias in the medical community. I do encourage people to at least ask their [healthcare provider] what resources are available if they’re interested in losing weight so they have all the information and resources to help them make the best next step.”

Help Us Increase Access to Obesity Treatment >>

This educational resource was created with support from Novo Nordisk, a HealthyWomen Corporate Advisory Council member.

From Your Site Articles

Related Articles Around the Web

Source link

What Is POTS? – HealthyWomen

If you’ve ever stood up too fast and felt dizzy for a moment, you know how disorienting that can be.

This happens because your blood pressure drops and your blood moves to the lower part of your body when you stand up. Sometimes, it can take a second for your system to increase your heart rate and get the blood flowing to your brain — which is why you feel lightheaded.

An occasional spell of dizziness when standing up is usually not cause for concern. But for people with postural orthostatic tachycardia syndrome (POTS), standing up can cause a wide range of problems including fainting, and it can have a serious negative effect on your quality of life.

As many as 3 million people in the U.S. have POTS, and most of them are women and people assigned female at birth. If you think you may have POTS, or know someone who does, here’s what you need to know about this health condition.

What is POTS?

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart rate to go up more than 30 beats per minute, and your blood pressure to go down when you stand up.

Basically, the disorder affects the autonomic nervous system, which is responsible for regulating things like your heart beat and blood pressure. It may not sound that serious, but people with POTS can experience debilitating symptoms including rapid heartbeat (tachycardia) and extreme fatigue among other chronic problems.

What are POTS symptoms?

In addition to an increased/rapid heart rate, people with POTS can have a range of symptoms. These can include:

Extreme fatigue
Lightheadedness
Brain fog, including focus and memory problems
Nausea
Headache attacks
Sweating
Shakiness
Exercise intolerance (unable to do physical activity)
A pale face
Purple-tinged hands and feet when they are lower than the heart

The symptoms of POTS can get worse if you’re in the heat (even taking a hot bath) or standing a lot. Some women experience an increase in symptoms before their period starts and these can get worse if you’re not hydrated or if you need more salt in your diet.

What are the types of POTS?

There are three main subtypes of POTS. These are:

Neuropathic: The small nerve fibers in your abdomen and legs have trouble carrying blood up from your lower body. This causes swelling in the legs, discoloration and less blood flow to organs around the stomach area can cause gastrointestinal problems.

Hyperadrenergic: Standing up makes your blood pressure and norepinephrine (the fight-or-flight hormone) levels go up. This makes you feel dizzy and short of breath in addition to other symptoms.

Hypovolemic: You have less blood in your system and fewer red blood cells. This can cause weak muscles and problems during exercise.

How is POTS diagnosed?

With all the different symptoms, it can be hard to get a diagnosis for POTS. For women and people assigned female at birth, the condition can be misdiagnosed for years and lead to a significant delay in care. Research shows women with POTS wait at least five years for a diagnosis compared to three years for men.

Two common tests used to diagnose POTS are a 10-minute standing test and a head-up tilt table test. The standing test is pretty much exactly like it sounds: Your healthcare provider (HCP) will measure your blood pressure, heart rate and other levels as you stand up from a relaxed position and continue to stand for 10 minutes.

The head-up tile table sounds more like something out of a magic act: You’re strapped on a table lying flat and the table is raised to an upright position. Your HCP will check your heart rate, blood pressure and other levels to see if you may have POTS.

Other tests and blood work may be ordered to look at the nerves that control the heart and control sweating.

POTS treatments

Since the exact cause of POTS is unknown, treatments can vary depending on symptoms. Treatment options to help manage POTS can include:

Adding salt to your diet
Staying hydrated and drinking about 64-80 ounces (about 2-2.5 liters) of fluid a day
Wearing compression garments to push blood deeper into the veins
Taking medication including beta receptor blocking agents
Eating a high-fiber diet
Incorporating exercise (or starting physical therapy if you have exercise intolerance) including isometric exercises to help push blood back toward your heart

What are POTS medical devices?

You can monitor POTS at home to help you identify triggers and lifestyle changes that may help with symptoms. You may want to consider getting a:

Blood pressure monitor
Heart rate monitor
Finger pulse oximeter
Smartwatch or smart ring to track your heart rate

Tips for POTS self-care

In addition to diet and exercise, there are some things you can do to help your overall well-being and minimize symptoms of POTS.

Get enough sleep
Try yoga or meditation to work on breathing techniques
Join a POTS support group or consider counseling to talk about your condition

POTS can be difficult to diagnose and every case is different. If you’re experiencing dizziness, rapid heart rate or any other symptoms of POTS, talk to your HCP as soon as possible. Many people with POTS can manage symptoms with the right treatment plan.

From Your Site Articles

Related Articles Around the Web

Source link

Family Planning with a Chronic Illness

Erica Lemons knew her path to motherhood wasn’t going to be easy. But she wasn’t going to let her chronic health condition stop her from getting pregnant.

“My doctor told me to talk to him before I got pregnant because of possible complications, so that’s the first thing I did,” she said.

Lemons quickly learned that trying to get pregnant with a chronic disease was going to be even more complicated than she thought. For starters, she had to stop taking the medicines she was on for her chronic illness and had to wait months before she could get pregnant.

“I was shocked — I didn’t realize how long I had to be off the medicines before I could even try,” she said. “My advice for anyone thinking about getting pregnant is to talk to your doctor sooner than later. You may have to wait longer than you think.”

Nearly 3 out of 10 women and people assigned female at birth in the U.S. are living with multiple chronic conditions. These conditions usually require medicine, which is why it’s important to talk about family planning with your healthcare provider (HCP), even if it’s just a possibility for the future. Your HCP may be prescribing more aggressive treatments that may not be the best option if you’re considering pregnancy in the future.

Unfortunately, not all HCPs are asking about pregnancy planning. This may be because of many factors, including a lack of time, knowledge and skills to start the conversation. In one review of pregnancy planning and women living with chronic conditions, the women said their health information needs were not being met. And they wanted to have better discussions with their HCPs.

What is shared decision-making?

Shared decision-making is when you decide on your treatment path after a thorough conversation with your HCP. This is especially important for people with chronic health conditions who are planning a family.

HCPs manage your health before, during and after pregnancy and provide guidance that may influence family planning. “Some diseases worsen during pregnancy and some improve, and knowing this would help you determine a good time to start trying to become pregnant,” said Connie Newman, M.D., adjunct professor of medicine at NYU Grossman School of Medicine and a member of HealthyWomen’s Women’s Health Advisory Council.

Chronic health conditions last more than a year and can include a wide range of diseases from multiple sclerosis (MS) to diabetes to high blood pressure. Both the condition and the medicine can affect pregnancy and your ability to get pregnant in the first place. Some medicines can cause serious problems during pregnancy, such as preterm birth and birth defects.

Read: Can Living in the U.S. Increase Your Risk of Preterm Birth? >>

“Patients should tell their HCP about their plans for pregnancy and ask the HCP whether the prescribed treatment is safe during pregnancy. If the answer is no, then the patient can ask about taking a different medication that is safe to use,” Newman said. “Patients should also ask whether the disease will worsen during pregnancy, and how their medications should be adjusted.” Changes may include the dose, how many times you take it and/or a different medicine altogether.

Questions to ask your healthcare provider about chronic disease and pregnancy

If you haven’t talked to your HCP about your plans, you may want to schedule a preconception counseling visit. During the appointment, your HCP will review your treatment plan and how pregnancy may affect your health overall.

Newman said it’s a good idea to write down questions you have about pregnancy and bring them with you to your appointment. These can include:

Will my disease get worse during pregnancy or improve? And when will this happen (first, second or third trimester)?
Will the medicine I’m taking be harmful during pregnancy, including very early pregnancy before I may even know I’m pregnant?
Can you describe the risks of the medicine?
Will I have to stop the medicine or switch to a different medicine when I’m pregnant? Should I do this when trying to get pregnant or after the pregnancy test is positive and I know for sure I’m pregnant?
Can I breastfeed while taking this medicine?

You can also talk with your HCP during your well visit if you haven’t already done so.

Weighing risks and benefits of treatment options

Weighing the risks and benefits of treatment are a crucial part of the shared decision-making process. “The HCP and the patient should discuss the risks and benefits to determine a plan for medication use during pregnancy,” Newman said.

Outside of talking with your HCP, Newman said women can read about potential effects of treatment options using reputable online sources, including the patient information part of the drug label or the drug labels written for prescribers.

Managing chronic conditions can also mean involving specialists and other HCPs in your family planning process. Lemons said her HCP connected her with a fertility specialist, for example, and other HCPs along the way. She said she appreciated all the frank conversations they had and that his support meant so much during a time when she felt so overwhelmed.

Lemons gave birth to a healthy baby boy in 2012. She said all the planning and waiting and anxiety wasn’t easy. But nothing is exactly easy when you’re pregnant and managing a chronic condition. “Just remember to be kind to yourself and your mental health,” she said. “Put yourself first.”

This educational resource was created with support from Viatris, a HealthyWomen Corporate Advisory Council member.

From Your Site Articles

Related Articles Around the Web

Source link

How MS Affects the Body

Slide 1

How MS Affects the Body

MS affects everyone differently and can impact many parts of the body

Slide 2

Multiple sclerosis (MS) is a disease that affects the central nervous system, which is made up of the brain and spinal cord.

MS happens when the immune system attacks the myelin sheath, the cover that protects nerve fibers. The damage complicates communication between the brain and the rest of the body. As a result, MS can affect many parts of the body.

Slide 3

Brain

Damage to myelin and the nerves underneath can disrupt the brain’s ability to send signals to the rest of the body.

About 1 in 2 people with MS have problems with thinking, called cognitive problems, including trouble concentrating and poor memory.

Slide 4

Eyes

MS can cause inflammation in the optic nerve, which connects the eye to the brain. This inflammation may lead to vision problems, including blurred vision and pain with eye movement.

Slide 5

Throat

MS can damage nerves that control the muscles required for chewing, swallowing and speaking. MS may also cause throat numbness that makes chewing and swallowing hard.

Slide 6

Chest

Nerve damage to chest muscles can cause breathing problems.

Nerve damage can cause a symptom known as “MS hug” (aka “girdling”), which is the feeling of a tight band around the chest or ribs.

Slide 7

Arms

Muscle weakness in the arms and legs is a common MS symptom.

Many people with MS also get a “pins and needles” feeling or numbness in their arms and legs.

Slide 8

Bladder and Bowels

Nerve damage can lead to problems with bladder and bowel control.

Slide 9

Legs and Feet

Weakness in one or both legs is a common symptom that can make walking or balancing hard. Leg and foot pain, numbness, and tingling are common as well.

Some people with MS get “hot feet” (erythromelalgia), which is when their feet feel hot and swollen even though they look normal.

Slide 10

MS affects everyone differently, and symptoms can be hard to predict. A healthcare provider can help you decide if treatment is an option for managing your individual MS symptoms.

This educational resource was created with support from Novartis.

Source link

En qué forma afecta el cuerpo la EM

Slide 1: Title Page

En qué forma afecta el cuerpo la EM

La EM afecta a cada persona en forma diferente y puede impactar muchas partes del cuerpo

Slide 2: Intro page

La esclerosis múltiple (EM) es una enfermedad que afecta al sistema nervioso central que incluye al cerebro y a la médula espinal.

La EM ocurre cuando el sistema inmunológico ataca la vaina de mielina, la capa que protege las fibras nerviosas. El daño complica la comunicación entre el cerebro y el resto del cuerpo. Consecuentemente, la EM puede afectar muchas partes del cuerpo.

Slide 3:

El cerebro

La lesión de la mielina y de los nervios que se encuentran bajo esta puede alterar la capacidad del cerebro de enviar señales al resto del cuerpo.

Aproximadamente 1 de cada 2 personas con EM tiene problemas de la actividad mental, conocidos también como problemas cognitivos, incluyendo problemas de concentración y mala memoria.

Slide 4:

Los ojos

La EM puede causar inflamación del nervio óptico, el cual conecta el ojo con el cerebro. Esta inflamación puede causar problemas de la vista, incluyendo visión borrosa y dolor cuando se mueve el ojo.

Slide 5:

La garganta

La EM puede dañar los nervios que controlan los músculos requeridos para masticar, tragar y hablar. La EM también puede causar adormecimiento de la garganta, lo cual dificulta las actividades de masticar y tragar.

Slide 6:

El pecho

Lesiones de los nervios de los músculos del pecho pueden causar problemas respiratorios.

Las lesiones de los nervios pueden causar un síntoma conocido como el “abrazo de la EM” (también denominado “sensación de presión”), que se siente como si una banda apretase el pecho o las costillas.

Slide 7:

Los brazos

Debilidad muscular de los brazos y las piernas es un síntoma frecuente de la EM.

Muchas personas con EM también tienen una sensación de “alfileres y agujas” o de adormecimiento en sus brazos y piernas.

Slide 8:

La vejiga y los intestinos

Las lesiones de los nervios pueden causar problemas con el control de la vejiga y de los intestinos.

Slide 9:

Las piernas y los pies

Debilidad de una o ambas piernas es un síntoma frecuente que puede dificultar el caminar o el equilibrio. Dolor, adormecimiento y cosquilleo de las piernas y de los pies son síntomas frecuentes también.

Algunas personas con EM tienen “pies calientes” (eritromelalgia) que es cuando sus pies se sienten calientes e hinchados independientemente a pesar de que su apariencia es normal.

Slide 10:

La EM afecta a cada persona en forma diferente y los síntomas pueden ser difíciles de predecir. Un proveedor de atención médica puede ayudarte a decidir si algún tratamiento es una opción para manejar tus síntomas personales de la EM.

Este recurso educativo se preparó con el apoyo de Novartis

Source link