(BPT) - The ability to see the people, places and things in front of you is one of life’s most precious gifts. Imagine a life without the ability to see these things clearly — what steps would you then take to protect your vision? Life with Age-related Macular Degeneration, or AMD, can potentially lead to vision loss or blindness. While an AMD diagnosis can be a scary thought, there are things people can do to help reduce the risk of progression of the disease. Here’s what you need to know.

What is AMD?

AMD is a leading cause of vision loss for people age 50 and older, and an estimated 16 million Americans are living with AMD. AMD affects the macula, the part of the eye that supports sharp, central vision needed for seeing objects clearly. The condition is progressive, which means that central vision can ultimately become impaired, which may cause difficulty keeping up with daily activities like driving, reading or recognizing the faces of loved ones. While there is no cure for AMD, there are steps patients can take to help reduce the risk of progression.

Tips for taking action

• Early detection of AMD is imperative. While early-stage AMD often does not present any symptoms or changes in vision, patients should get a comprehensive dilated eye exam once a year, so they may catch the condition early on. This is the best method to receive a proper diagnosis of AMD, as the dilation allows the doctor to see the back of the eye where this issue occurs.
• Adopt a healthy lifestyle. People with AMD should make sure they are eating a diet that consists of eye-healthy nutrients, like green leafy vegetables and fatty fish; exercising regularly and not smoking.

In addition, people diagnosed with AMD should talk to their doctor about taking a vitamin based on the AREDS2 study. PreserVision^® AREDS 2 formula vitamins contain the exact nutrient formula recommended by the National Eye Institute to help reduce the risk of moderate to advanced AMD progression.

Get the facts and find support

Patients are often learning about AMD for the first time as they’re being diagnosed, which can be overwhelming. While the Internet is a great resource for patients, medical literature about AMD is often dense and difficult to follow. That’s why Bausch + Lomb developed SightMatters.com, an online resource to provide AMD patients with personalized tips and tools, along with a support system and network, to help each patient better navigate their life living with AMD no matter where they are on that journey.

SightMatters.com aims to help patients understand what AMD is, and how they can manage it. It also allows patients the opportunity to create a personalized action plan, which they can use to discuss with their doctor so they can start taking charge of their condition and continue to see what they love each day. Visit SightMatters.com to begin taking action today.

PreserVision is a trademark of Bausch & Lomb Incorporated or its affiliates.

AREDS2 is a registered trademark of the U.S. Department of Health and Human Services (HHS).

© 2020 Bausch & Lomb Incorporated or its affiliates.

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Understanding Rare Cancers

Four facts to know about one type of rare cancer, soft tissue sarcomas

(Family Features) Although rare cancers don’t occur often, they can affect people of all ages and genders.

A rare cancer is defined as fewer than 15 new diagnoses per 100,000 people per year, according to the National Cancer Institute (NCI). Additionally, as noted by the American Cancer Society (ACS), the 5-year survival rate is lower for people diagnosed with a rare cancer than for people living with more common cancers. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates.  

1. There are more than 50 types of soft tissue sarcomas (STS). STS account for about 1% of all cancers and affect soft tissues such as muscle, fat, nerves, blood vessels and skin. Although STS can be found in any part of the body, they are often in the arms or legs, internal organs, the back of the abdominal cavity or in the trunk, head and neck area.

If you have recently been diagnosed with STS, it’s important to ask your doctor for more information about the specific sub-type you have. For example, if you received a diagnosis of undifferentiated sarcoma, ask your doctor for an integrase interactor-1 (INI1) test to see if you have a rare STS called epithelioid sarcoma (ES). (See sidebar for more on ES.)

2. STS can be visible or invisible depending on location. STS may appear as painless bumps under the skin, usually on arms or legs. Some sarcomas begin in the abdomen and typically don’t show symptoms until they grow and press on nearby organs, nerves, muscles or blood vessels. When this occurs, symptoms may include pain and trouble breathing.

3. Early diagnosis can help inform disease management. As with other types of cancer, early diagnosis of STS is key, as earlier treatment may result in more favorable outcomes. Because other conditions can cause similar symptoms, it’s important to check with your doctor if you are experiencing any of the warning signs listed above. If your doctor decides it’s best to “watch and wait,” consider developing a six-week follow-up plan in partnership with your health care team if your symptoms have not improved.

4. Seeking care from a specialist is key. Given the rarity of STS, finding a sarcoma specialist who understands the complexity of this rare disease and can help determine which treatment option is best for you is important. Treatment options depend on multiple factors, including your overall health, the location and type of tumor, its size and whether the disease has spread elsewhere in the body. STS are typically treated with a combination of options including chemotherapy, radiation therapy and surgery. A specialist may also speak to you about participating in a clinical trial where investigational therapies in STS are being studied.

Learning More About Epithelioid Sarcoma

A rare type of STS, epithelioid sarcoma (ES) accounts for less than 1% of all STS, which themselves account for approximately 1% of all cancers, according to research published in “Archives of Pathology & Laboratory Medicine.” ES can present as a lump or sore on the skin.

Notably, more than 90% of ES tumors do not express the INI1 protein, which when present acts to suppress tumor growth. INI1 loss plays an important role in the diagnosis of ES, according to researchers with “The American Journal of Surgical Pathology.”

Data from the NCI indicates that approximately 150-200 people in the United States are diagnosed with ES each year. Research published in “The Journal of Clinical and Aesthetic Dermatology” found the disease often occurs in young adults in their 20s and 30s. Because most ES patients are adolescents and young adults, there is a gap in the unique psycho-social needs for this patient population, including resources for patients who miss school while undergoing treatments, as well as fertility considerations later in life.

If you or someone you love is living with ES, you can find resources, information and the real-life perspective of an ES survivor at ESsentialsforES.com.

 

Content courtesy of Epizyme, Inc.

Photo courtesy of Getty Images

SOURCE:
Epizyme

(BPT) - Schizophrenia is a complex and chronic brain disorder that can interrupt every aspect of an adult’s life. For adults living with serious mental illness, like Jason, the journey to finding the right treatment plan, including medication and supportive therapies, can take years. During that time, adults living with schizophrenia may experience multiple episodes, breakthrough symptoms or relapse. While it can be challenging for many individuals to remember to take their daily medication, it can be especially difficult for adults living with schizophrenia, who after missing doses of their treatment may increase their risk for breakthrough schizophrenia symptoms or relapse.

Jason was diagnosed with schizophrenia when he was in his mid-twenties. Following his diagnosis, Jason struggled for ten years to consistently follow his schizophrenia treatment plan.

“At the time, my schizophrenia hallucinations and delusions were full blown. I thought I had special powers — that when I made eye contact with people, I could talk to them. I thought most people were out to get me, including my parents,” Jason says. “When I was having a lot of challenges, it strained my relationship with my parents.”

Unfortunately, Jason’s story is not uncommon. Adults living with schizophrenia may experience a cyclical pattern with their schizophrenia treatment journey, consisting of beginning a new treatment which lessens their symptoms, followed by a lack of adherence with their treatment plan and missing doses and leading to worsening schizophrenia symptoms or a relapse. As a matter of fact, research has found that adults living with schizophrenia experience on average 9 relapses in less than 6 years. There are multiple factors that can increase the risk of an episode (breakthrough symptoms or relapse), including missing doses or stopping medication.

Finding the right treatment plan, often consisting of a combination of supportive therapies and medication, can help adults control their schizophrenia symptoms.

After trying numerous treatment options and being hospitalized multiple times due to his schizophrenia symptoms, Jason’s doctor talked to him and his parents about switching his medication to a once-monthly injection to limit worrying about missing doses and to help Jason better manage his schizophrenia. Together, they reviewed the potential benefits and side effects of treatment options.

After being treated with a once-monthly injection and participating in supportive therapies, Jason’s symptoms were more controlled.

“For me, it was important to get healthy, which included working with a psychologist and attending group therapy sessions early in my treatment journey, as well as taking my medication and exercising,” Jason said.

By finding a comprehensive treatment plan that worked for him, Jason was able to focus on other things like friends, family, and activities he enjoys like writing, kickboxing, and spending time with his nieces and nephews. “Most importantly,” he said, “I started working with those who were trying to help me. I began to see my parents as allies in my fight. Now I am closer to them than ever.”

Reflecting on his past experiences, Jason now wants to share his personal story to help other adults with schizophrenia navigate their own treatment journey.

“I didn’t ask for this, but I am dealing with it. I want to help other people. Don’t give up!”

If you or a loved one are an adult living with schizophrenia, ask your doctor if a change in your treatment plan could make the difference for you. Learn more at https://www.oncemonthlydifference.com.

Jason is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.

(BPT) - Having a friend or loved one with a chronic and progressive condition teaches you many things: patience, understanding and adapting to lifestyle changes after diagnosis. But for Mary, supporting her friend, Barbara, living with a serious lung condition called nontuberculous mycobacterial (NTM) lung disease taught her the importance of listening.

While taking weekly walks together, Mary first noticed Barbara was experiencing respiratory symptoms, such as coughing fits and getting tired very easily. Barbara’s symptoms continued for two years, and Mary later found out that Barbara was living with NTM lung disease — a serious and progressive condition caused by bacteria that can lead to lung damage and respiratory symptoms.

From speaking with Barbara, she realized that while Barbara was relieved to have an explanation for her symptoms, she also felt overwhelmed and scared by her new diagnosis.

Mary recalls, “As her friend, I was upset that she had to face this health issue and wanted to know how I could help. I realized the best way I could show Barbara my support was to ‘walk with her’ and let her know she wasn’t alone.”

About NTM Lung Disease

NTM bacteria are common in the environment and can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma, are more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM to infect their lungs.

NTM lung disease is considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.

Providing Encouragement and Understanding

Following an NTM lung disease diagnosis, patients may have a hard time coping with the impact the disease can have on their lifestyle. Emotional support from family and friends is crucial to help patients navigate these new challenges.

After learning about Barbara’s diagnosis, Mary encouraged her to speak about the tests she was undergoing and treatment she was taking as well as how she was feeling. Mary was also there to support Barbara through some of the lifestyle changes that she was making to help manage her condition — whether it was hearing about the adjustments she made when traveling or ways to help limit her exposure to NTM bacteria at home.

Mary also understood that keeping up weekly walks helped Barbara physically and emotionally. She made sure that they stuck to their routine and made adjustments whenever necessary, such as walking for shorter distances or slowing down their pace based on how Barbara was feeling.

“Barbara’s diagnosis made our friendship stronger because she knew she could confide in me and receive the support and reassurance she needed — even if that just meant listening,” Mary shares. “While everyone’s experience with NTM lung disease is different, sometimes knowing there is someone willing to listen to what you’re going through can make a world of difference.”

Staying Informed

Like many other loved ones of NTM lung disease patients, Mary had never heard about the condition before Barbara’s diagnosis. She let Barbara be her teacher and learned a lot about the condition through her experience. Today, she’s more informed about NTM lung disease and can be a better source of guidance and support for Barbara.

There are also several online patient resources available to learn more about NTM lung disease, such as the Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Barbara and Mary. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources.

Sponsored by Insmed Incorporated.

The Rarest of the Rare

What to know about a cancer you may not have heard of

(Family Features) A woman celebrating her 40th birthday, a young boy starting second grade or a college grad about to begin his career. All three could develop a rare form of cancer known as epithelioid sarcoma (ES), a form of soft-tissue sarcoma.

There is little information available about ES. Patients, advocates, doctors and researchers across the United States are aiming to educate people about this ultra-rare cancer and the unmet need for an effective, tumor-specific treatment. Consider these facts about ES:

What are Soft-Tissue Sarcomas and What is Epithelioid Sarcoma?
Soft-tissue sarcomas (STS) are a type of cancer that occur in tissue like muscle, fat, skin, nerves and blood vessels. There are more than 50 types of STS, including ES, which is a rare form that can occur under the skin in the limbs (such as the arms, hands, legs or feet) or soft tissue in other places like the abdomen. Adults in their 20s and 30s and men, in particular, are more likely to get ES, although it can affect people of all ages and genders, according to research published in the Journal of Clinical and Aesthetic Dermatology.

How Rare is Rare?

According to the American Cancer Society, a rare cancer is defined as fewer than six new diagnoses per 100,000 people per year.

ES is an ultra-rare cancer. According to available epidemiology and case reports, it is estimated about 600 people are properly diagnosed in the U.S. and Europe each year.

What are the Most Common Types of ES and How Do They Impact Diagnosis?
ES can take two forms:
Distal-type: Classic form, typically affects teenagers and young adults.

• Typically forms under the skin in areas like hands, legs and feet.
• Can be mistaken for another skin condition like an infected wart or a wound that won’t heal, which may delay diagnosis.
• Proximal-type: Rarer form, mainly affects adults and is more aggressive.
• Typically forms in central areas of the body like the abdomen.
• Can be mistaken for menstrual cramps or an upset stomach, making identification and diagnosis more difficult.

Dealing with a Diagnosis?
Due to its rarity, harmless appearance in its initial stages and occurrence in young people, ES is often misdiagnosed, according to the Liddy Shriver Sarcoma Initiative. For this reason, the Sarcoma Foundation of America recommends checking often for lumps and bumps in places they shouldn’t be.

For people faced with a sarcoma diagnosis, it’s important to get a second opinion from a sarcoma specialist. These specialists have extensive knowledge of STS and can determine what form of sarcoma one may have, what stage it is and the best course of treatment. The specialist may confirm the diagnosis with a physical examination, a scan or a tissue sample (biopsy) of the area.

It’s common to feel a range of emotions after a diagnosis of ES, according to Clear View Health Partners, including:

• Fear
• Denial
• Frustration
• Anxiety
• Hope that treatment will be successful
• Determination to beat ES

What Treatment Options are Available?
Treatment options depend on a variety of factors, including the location of the tumor, tumor staging and whether the disease has metastasized or spread to other parts of the body.

For patients with early stage ES, many elect to have surgery to remove the tumor, which may precede or be followed by radiation therapy or chemotherapy treatment, according to the Journal of Clinical and Aesthetic Dermatology. If the cancer returns or spreads, a patient may undergo radiation therapy and chemotherapy. New treatment options are being studied through clinical research, which is why seeking a specialist in the field is important if one is faced with a diagnosis.

As with many cancers, early detection is important and can increase survival or successful treatment. Typically, the distal form of ES is associated with more favorable survival rates than the proximal form.

4 Things to Do to Address ES Today

1. Don’t ignore your bumps and lumps, see a doctor as soon as possible.

• curesarcoma.org/patient-resources/sarcoma-infographic/  

2. Learn more about epithelioid sarcoma and its symptoms.

• mayoclinic.org/diseases-conditions/epithelioid-sarcoma/cdc-20392420

3. Seek a second opinion.

• sarctrials.org/sarc-centers-map

4. Find support if you’re faced with a diagnosis.

• sarcomaalliance.org/resources/support-groups
• cancersupportcommunity.org
• cancercare.org/counseling

An ES Diagnosis Journey

In the spring of 2008, Maria Voermans’ 4-year-old daughter requested an “airplane ride,” and as Voermans lifted the young girl up with her legs, she had to make an “emergency landing” because of some sudden and significant pain in her upper right thigh.

After a few months, the pain persisted. Voermans continued to jog and play sand volleyball, thinking nothing of it. At the recommendation of her primary care physician, she took some anti-inflammatories and tried to rest, which wasn’t easy to do as a single mother of two young children.

Two more months went by and her leg caused increasing problems. She could feel something in her leg, but never considered it a “lump” because it was not visible on the outside. Voermans took matters into her own hands and visited a sports medicine orthopedic specialist for further testing.

An MRI found a mass in her right leg and she was referred to one of the few musculoskeletal oncologists in Wisconsin, her home state. He ordered a biopsy, which on Voermans’ youngest daughter’s third birthday confirmed her worst fear: it was a rare form of cancer called proximal-type epithelioid sarcoma, and it was stage three. Her biggest concern was not living to experience future holidays, birthdays, graduations and other life milestones with her daughters.

Voermans underwent chemotherapy, radiation therapy and had surgery to remove the tumor. As of July 2018, Voermans reports the cancer has not returned.

Today, she’s a wellness coordinator supporting other people diagnosed with cancer who are undergoing treatment or post-treatment. She’s able to use her own cancer journey to provide empathy to others, and it’s brought satisfaction to the whole experience.

Content courtesy of Epizyme, Inc.

Photo courtesy of Getty Images (Doctor talking to man)

SOURCE:
Epizyme, Inc.