Living with a rare disease can feel isolating, but in fact, 1 out of every 10 people has a rare disease.
That’s one in every crowded elevator. Four on every full bus. Thirty million people in the U.S. alone.
With so many people impacted by rare diseases, and so much recent progress in medical science, you might think that most rare diseases would be treatable. In fact, only about 250 of the 7,000 identified rare diseases have available treatments. That’s less than 5 percent. In addition, many of these diseases are unknown to the general public.
On Feb. 28, 2015, Rare Disease Day, individuals whose lives have been touched by a rare disease will join together to tell their neighbors, communities and the world what life with a rare disease is like.
The Pulmonary Hypertension Association is proud to partner with the National Organization for Rare Disorders in support of Rare Disease Day.
Pulmonary hypertension (PH) is a complex, potentially fatal lung disease that causes high blood pressure in the lungs, making it difficult to receive enough oxygen and forcing the heart to work harder. This can lead to right heart failure or death. Symptoms of PH include shortness of breath, fatigue, and in later stages, fainting. Because the symptoms are similar to those of more common conditions, PH patients often visit multiple doctors and wait two years or more for an accurate diagnosis. Though there are a dozen treatments for PH, there is no cure.
Individuals living with PH are forced to chart a new normal for their lives. For some that means restricting activity and taking complex cocktails of medications. For others it means not being able to walk up stairs or lift their children without the risk of passing out.
‘PHight’-in For A Better Life
Despite these obstacles, the PH community is full of people who choose to “PHight” for a better life for themselves and others living with rare disease.
- “It’s so rewarding to work on the Stanford Race Against PH every year. It’s inspiring to see the effort and enthusiasm from the PH community,” said Kristi Kerivan.
- “I’m making purple cupcakes with PH on top and wrapping the awareness bracelets around them! I’ve been fundraising…Let’s buy a cure!” said Jennie Scott Heineman.
- “As a patient, being active in advocacy gives me another way to fight PH besides the physical fight. We all have the right to be heard,” said Perry Mamigoninan.
On Feb. 28, please join those living with pulmonary hypertension and the approximately 7,000 other rare diseases to spread the word about the urgent need for rare disease research and treatment.
To learn more about Rare Disease Day visit www.rarediseaseday.us.
To learn more about pulmonary hypertension visit www.PHAssociation.org.
By Ed of Allsup
Here are some interesting numbers: 1 in 2 men will be diagnosed with cancer, and 1 in 3 women will be diagnosed with cancer, according to the National Cancer Institute.
On the other hand, consider that only 5 to 10 percent of cancers are determined to be hereditary, according to the American Cancer Society (ACS).
What this means—and many cancer groups are trying to get the word out—is that a number of types of cancer are preventable through lifestyle choices, eating habits and other methods of prevention.
Social Security Disability And Cancer
I bring this up now because February is National Cancer Prevention Month. At Allsup, we have helped thousands of individuals with cancer to receive their Social Security Disability Insurance (SSDI) benefits.
People who contact Allsup typically have experienced severe impact on their lives from cancer, either from the progress of the disease or the side effects of the treatment.
What types of cancer may qualify for SSDI benefits? They include:
- Breast cancer
- Colorectal cancer
- Brain cancer
- Lung cancer
- Bladder cancer
- Kidney cancer
- Liver cancer
- Pancreatic cancer
- Skin cancer
- And others
If you are applying for Social Security disability benefits, it’s because you had to stop working and can no longer continue with substantial gainful activity due to disability. It’s because your cancer created a new normal for you, and this happens to millions of people in the U.S. each year.
But there is the opportunity to try to change these statistics. During National Cancer Prevention Month, consider what you can do to raise awareness about cancer prevention. You may want to start with education—reduce your own risk. There are numerous websites with good information, including the Centers for Disease Control and Prevention (CDC) and the ACS.
The more people use all of the great knowledge we have about cancer prevention—the more likely we’ll see fewer people who need SSDI because of cancer.
If you or someone you know has cancer and is considering applying for SSDI benefits, you can reach an Allsup disability specialist at (800) 678-3276 with your questions.
Click here to visit our Facebook page and share your best resources and websites for cancer prevention.
By Leia of Allsup
By now, you’ve all probably heard the term “app.” For those who don’t know what an app is: It’s a user-friendly program on a mobile device, like a smartphone, that can enhance your life in some way.
More and more, Allsup customers can find easy ways to access important resources, whether you’re a veteran, caregiver or person with a disability.
So take a banking website, for instance. There are pages and pages of information on loans, services, products—but maybe you just want to see your account. Many banks now put their most popular features into an easy-to-use app for their customers. Consider that Apple’s App Store has 1.2 million available apps. With this number growing by the day, there’s no guessing what you might find.
Here are some apps I’ve come across designed specifically for people living with disabilities.
- Med Time. This app reminds you when to take a particular medication. It saves and stores all of your medication information. It also lists what you take, what dose and provides a medication reminder with an alarm that sounds off.
- TapToTalkTM. This app is designed specifically for those with verbal difficulty. Users can communicate at the touch of a button without saying anything themselves.
- Voice Dream Reader. This app helps people with visual impairments by using text-to-speech technology. People who have trouble seeing the screens on their smartphones or tablets can have messages read aloud. They also can record them without needing to type/text any words. You also can upload Word or PDF documents for use in the app.
- Alzheimer’s Cards. This app helps those with Alzheimer’s disease by stimulating conversation and memories based on the images that are shown on the app. The app’s features provide a form of cue cards for helping with communication.
- In Case of Emergency (ICE). This app provides someone with all the information needed to reach emergency contacts or your doctor in critical situations. The app also holds vital medical information, such as allergies and medications.
- The Americans with Disabilities Act (ADA) Reference. This app allows you to easily review and reference provisions in the ADA. You can view a handheld version of the Act, with FAQs and simple sections of the bill. This could be an important resource when handling issues of fairness and discrimination for people with disabilities.
- BigNames. This app provides an extra-large, more readable font for your contacts list, so it is easier to see when browsing and dialing numbers.
These are just some of the many apps offered to those needing assistance.
If you find that you can’t do something or wish you had help with a task—try searching for an app that can help you. More than likely “there’s an app for that.”
Do you have an app you use that you’d like to share with other Allsup customers and fans? Click here to post it to our Facebook page and use the hashtag #SSDIApp.
from → Uncategorized
Hearts are everywhere in the month of February—after all, it is Valentine’s Day and American Heart Month.
When you think of Heart Month, you most likely think of the prevention of acquired heart disease. Many people do.
But do you know about the No. 1 birth defect—the “other heart disease,” comprised of more than 40 defects and commonly referred to as congenital heart disease (CHD)?
Adults Living With Congenital Heart Disease
If not, here are 10 things you should know:
- CHD affects the structure and function of the heart and how blood flows through the heart and out to the rest of the body.
- About 1 out of every 100 babies is born with some type of CHD. And of these, 1 in 10 will not live until adulthood.
- There are estimated to be between 2-3 million people in the U.S. living with CHD, with adults outnumbering children.
- There is no cure, regardless of age and the number of surgeries. CHD is a lifelong disease requiring lifelong care by congenital heart specialists, not general cardiologists.
- Fewer than 10 percent of adults with CHD are receiving the recommended care in specialized adult congenital heart disease clinics.
- There is very little surveillance data in the U.S., and the data we have is extrapolated from our Canadian neighbors.
- CHD research is grossly underfunded relative to the prevalence of the disease.
- Healthcare costs and access to care are a constant challenge for those living with CHD, but more so for adults who report difficulty obtaining insurance that will cover the specialized care that is needed.
- Compared to the general population, adults with CHD have three to four times higher rates of emergency room visits, hospitalizations, and intensive care unit stays.
- CHD is a huge public health issue in the U.S. In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHD was nearly $1.5 billion. In the same year, the hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.
Congenital Heart Disease Awareness Week, Feb. 7-14, is the time to get the word out and educate the public about the impact of CHD on children, adults and their families.
Chances are you know someone who has CHD. Whether this is you, a loved one or a friend—help the Adult Congenital Heart Association (ACHA) spread the word.
To learn how, check out the ACHA website at http://www.achaheart.org/about-us/news/newsid395/96.aspx.
Please share this blog with your friends and family.
For decades after Vietnam, we heard all the horrible stories caused by exposure to the herbicide Agent Orange. War veterans charged that being near the chemical caused diabetes, leukemia, heart disease—even horrible birth defects for their children.
The U.S. military sprayed tens of millions of gallons of this nasty stuff all over Southeast Asia. The intention was to destroy the crops used to supply the enemy and to strip the forested areas they used for cover and concealment.
The chemical companies who manufactured Agent Orange and the U.S. Department of Veterans Affairs argued for years that the herbicide was harmless to humans. By 1993, the VA had granted benefits to only 486 of the nearly 40,000 veterans who had filed disability claims. After numerous medical studies indicated that exposure may indeed result in serious health problems, however, the VA began approving more claims.
Brett Buchannan is an Operation Iraqi Freedom veteran and an Allsup VA-accredited claims agent who helps veterans file disability appeals. The former Army artillery officer told me that proving VA eligibility for disability benefits is never an easy task, especially for Agent Orange exposure.
“Agent Orange claims are confusing because vets will not be awarded benefits just because they were exposed to the chemical. You also must have a resulting disability,” he explained “It’s a two-step process: First, the VA has to concede that you were exposed, then the veteran must prove that the disease or disorder is a result of that exposure.”
Brett said the VA assumes that 13 disabilities are related to Agent Orange, and that proving service connection is almost automatic.
Forty years after the last American troops left Vietnam, Agent Orange is back in the news. In January, the Institute of Medicine, a nonprofit, non-governmental agency, released a report that determined that two dozen C-123 aircraft, which were used to spray the chemical, had contained residual amounts of Agent Orange in the decade after the war.
Although the VA has repeatedly denied former C-123 crewmembers’ disability claims for Agent Orange exposure, now it has assembled a group of experts to respond to this report.
Click here for more information on how to apply for Agent Orange-related VA benefits.
Go to Allsup Disability Veterans Appeal Service® to learn how Allsup can help if you’ve been denied VA disability benefits. Or, call (888) 372-1190 to talk with an Allsup specialist about proceeding with a veterans disability appeal.
from → Veteran
When I dropped off my son at a party yesterday, the birthday girl’s mom wanted to know his birth date so she could jot it down on a waiver. I stood there and thought and thought.
It had been a busy weekend. Three sports events the day before meant I had driven around all day, keeping my daughter occupied with toys and snacks and songs, and I had gotten nothing done at home. I knew I had to fold laundry, get uniforms washed, put dishes in the dishwasher…and had I signed my daughter up for T-ball yet?
Because all these things had been on my mind as I drove my son to the party, they were all stuck in my head. Therefore, I could not pull out a date that I have known for the past ten years.
“Mom, it’s April 10th,” my son finally said.
Yep, I was having a brain fart. We all have them.
But imagine having them 100 times per day. That’s what happens after a brain aneurysm rupture.
My mom is at home, enjoying sleeping in her own bed, sitting at the kitchen table having meals served to her by her ever faithful husband, and sitting on the couch by her cozy fireplace catching up on episodes of Parenthood. She is still weak and very tired, but much of the time, she seems happy.
Other times, she’s frustrated. Understandably. She can hold a conversation well and even asks what each pill is for that is put in front of her. But if you put her on the spot and ask her to pull something specific from her brain, sometimes she can’t. One time I asked her a simple question like, “Are you finished?” and after a long pause, she said, “I’m sorry honey. I know it seems like I’m not going to answer you, but I just can’t think.”
Yesterday a speech therapist came over for the first time. My mom did the cordial “I’m feeling, okay, thank you,” when asked how she was. But then when the therapist asked her to name days of the week and months of the year, and in what state her grandson lives, that was hard. The therapist told her she could ask me for help if she wanted to, but my mom shook her head.
“Yeah, but that seems silly,” she said. See, she knows that she knows the answers. She just can’t get them out. The therapist explained to her that that was what they would work on in the upcoming weeks – training her brain to pull information out and put it into words.
After about 20 minutes of questions, my mom was exhausted. The therapist stood up and put her jacket on and told my mom she’d see her next time.
“I do have one more question though,” she said. “Do you like baseball?”
My mom looked relaxed and back in conversation mode.
“Yes, I love baseball,” she said.
“Great. Do you have a favorite team?” asked the therapist. And in the blink of an eye, my mom answered, “Yes, the Cardinals.”
“Wonderful,” said the therapist. “We’re going to get along just fine.”
Find more information about the impact of aneurysms, treatment and support groups by visiting the Joe Niekro Foundation. The nonprofit organization focuses on supporting patients and families, as well as funding research, treatment and awareness of brain aneurysms, arteriovenous malformation (AVM) and hemorrhagic strokes, according to its website.
By Ed of Allsup
I’ve talked with hundreds of people in my several decades as an SSDI representative, and it’s not uncommon for someone to tell me that they had to think twice about applying for Social Security disability benefits.
It’s true that some people who quit working for bad health can have very supportive families. Maybe your relatives, including your spouse and children, can help you cover living expenses with no problems.
But when you experience a severe disability and you’ve paid for SSDI benefits over many years of work, you have the right to seek those benefits.
Of course, many people who apply for SSDI benefits would rather still be working. They like being around people, they like contributing toward something—whether it’s serving customers or feeling productive in their job. But cancer treatments, severe back injuries and degenerative conditions like multiple sclerosis and Parkinson’s disease can make this impossible.
Why Apply For SSDI Benefits?
There are a number of reasons to apply for Social Security disability benefits that go beyond the fact that you have paid for those benefits with your FICA payroll taxes.
- Regular monthly income. You lost regular paychecks when you had to stop working, but here is some income that can help your family make up for the loss. Your monthly SSDI benefits may only amount to a fraction of what you earned while working, but these funds can help with healthcare expenses and other needs.
- Medical benefits. You can receive Medicare benefits if you are granted SSDI benefits. They typically start 24 months after you date of SSDI entitlement. It doesn’t matter how old you are—and you may be able to find coverage, like a Medicare Advantage plan, that lowers your healthcare costs.
- Protected retirement benefits. One benefit of receiving SSDI benefits is that Social Security will put a “freeze” on your earnings record during those years. They understand you have a disability. As a result, when you reach full retirement age, those years of earning zero dollars will not be factored into your benefits. If, on the other hand, you don’t apply for SSDI—SSA may simply count those years of zero earnings into your retirement benefit calculation.
If you’re still not sure you want to apply for SSDI, visit Why You Want SSDI on Allsup.com for a few more reasons.
Receive a free SSDI evaluation by calling an Allsup SSDI specialist at (800) 678-3276.
Or, click here for an easy online form to evaluate your eligibility for Social Security disability benefits.
My college math professor was aptly named Mr. Rhee (…mystery, get it?).
But if you insert public health implications into those math equations, my numerically-challenged brain transforms.
That’s when I get interested. I like mining research and translating confidence intervals into golden nuggets of information that people can actually understand and use to make informed choices about their health and finances.
Disabilities That Qualify For SSDI Benefits
The Social Security Administration (SSA) provides a formidable challenge when trying to do this for people seeking information about Social Security Disability Insurance (SSDI) benefits.
Case in point: Brain Injury Awareness Month is coming up in March. How many people with traumatic brain injury (TBI) apply for SSDI benefits each year? How many are awarded? How many currently receive SSDI benefits? I don’t know because SSA does not publish that type of specific information.
TBI and other conditions, such as bipolar disorder, stroke and diabetes, are lumped together with other conditions into broader categories, such as organic mental disorders, mood disorders, nervous system and sense organs and endocrine disorders. That’s why it’s difficult to attach definitive numbers to these specific and other prevalent conditions, such as fibromyalgia and lupus.
Broader Categories Of Disabilities
The “2013 Annual Statistical Report on the Social Security Disability Insurance Program” provides a list of the top 10 diagnostic categories.
Almost a third (30.5 percent) of SSDI beneficiaries have a musculoskeletal system and connective tissue diagnosis. What we don’t know is how many of those individuals had to stop working because of fibromyalgia, amputation or spinal cord injury.
I work with dynamic individuals from various nonprofit organizations who point out the lack of awareness, research and education regarding the conditions they represent. They know the needs that exist in their communities, but too often they are underrepresented.
The SSA is a goldmine of quantifiable information that could aid in advocacy, outreach and education efforts. Allsup will continue to conduct our own research and disseminate the information we receive. But if you’d like to see more, ask the SSA to collect and report statistics you can use. The agency is seeking feedback now through its Open Government Initiative.
Top 10 Diagnostic Groups
Here are the top 10 diagnostic groups that receive Social Security Disability Insurance benefits, based on the SSA’s data.
- Musculoskeletal system and connective tissue: 30.5 percent of SSDI beneficiaries. Includes osteoarthritis, fibromyalgia, spinal cord injury, carpal tunnel, degenerative disc disease, amputations and more.
- Mood disorders: 14.9 percent. Includes bipolar disorder, depression and more.
- Nervous system and sense organs: 9.3 percent. Includes stroke, Meniere’s disease and more.
- Circulatory system: 8.3 percent. Includes coronary artery disease, peripheral vascular disease and more.
- Schizophrenia and other psychotic disorders: 4.8 percent.
- Intellectual disability: 4.1 percent. Includes those with developmental disabilities.
- Injuries: 4.0 percent. Includes burns, fractures and more.
- Other mental disorders: 3.9 percent. Includes generalized anxiety disorder, borderline personality disorder and more.
- Organic mental disorders: 3.4 percent. Includes traumatic brain injury, Alzheimer’s disease, Korsakoff’s syndrome and more.
- Endocrine disorders: 3.3 percent. Includes diabetes mellitus, diabetes insipidus, hyperthyroidism and more.
If you’re thinking about applying for SSDI benefits, or need to file a disability appeal, contact Allsup at (800) 678-3276 for a free disability evaluation.
Click here to reach an Allsup SSDI specialist online.
By Tricia of Allsup
I have talked to Allsup customers who have a variety of disabilities in my years as personal financial planning manager here. There is one common element that is fairly common among all of them—no matter what kind of illness or disability they have.
That quality is perseverance.
Allsup helps our customers to persevere through some of the most difficult times of their lives. Perhaps they are facing a fairly recent diagnosis of an advanced stage of cancer, or perhaps a debilitating spinal injury that likely will never get better.
It takes energy, time and fortitude to persevere through these difficult ailments and conditions.
A New Year may not seem to offer much hope for the future, but let me offer some encouragement. At Allsup, we help our customers persevere against the overwhelming detail required for their Social Security Disability Insurance application.
We stand with our claimants at their hearings as they pursue their SSDI appeal. All of these aspects of getting through the SSDI program require perseverance, especially as the average wait for a hearing now tops 420 days.
Don’t Give Up On Health And Finances
But I also want to encourage people with disabilities to persevere in other facets of their lives—including their health and financial situation.
It may not appear, for many people, that there is anything they can do to improve their health when they are dealing with a severe disability. However, healthy life habits, attention to what they eat, physical activity and rest—are still important to anyone with a disability. It’s also critical to try to maintain some form of healthcare insurance.
Financial choices also continue to be important. Every decision you and your family make toward spending or saving now will impact options you have down the road.
Consider this early part of the year a time to take a step back and look at how you are taking care of yourself in these other aspects of your life. There are many resources available through disability groups and nonprofit associations, plus groups in your local community.
Small steps can really add up. So here’s wishing you a New Year that helps you and your family persevere in a positive way throughout 2015.
If you have decided in 2015 that it’s time to apply for SSDI benefits, click here or call an Allsup specialist at (800) 678-3276 for a free SSDI evaluation.
By Tai of Allsup
It’s not usually the topic of dinner conversation, but at a recent holiday gathering, the word “speculum” came up. The women at the table simultaneously clenched in their seats, while the men stared at the speaker vacantly, not grasping the word’s significance.
“What’s a speculum?”
If you don’t know what a speculum is, you are probably a male. If you are a woman, and don’t know what a speculum is, you are probably due for a Pap test―the screening test for cervical cancer.
Formerly the leading cause of cancer death in women in the U.S., cervical cancer is highly treatable at earlier stages. If detected early, at a “localized stage,” the five-year survival rate for cervical cancer is more than 90 percent. If detected after the cancer has spread to another part of the body, the five-year survival rate can drop as low as 16 percent, according to the National Cancer Institute (NCI).
Cervical cancer happens most often in women over 30. No matter what the ethnicity, all women are at risk. In its early stage, cervical cancer may not show any symptoms, which makes screening that much more important. The Pap smear searches for cell changes on the cervix that might become cancerous if left untreated. According to the American Cancer Society, screening for cervical cancer can actually prevent cancer by detecting and allowing the removal of these pre-cancerous lesions.
If a woman learns that she has cervical cancer and must stop working, she may be eligible for Social Security Disability Insurance (SSDI) benefits. The Social Security Administration (SSA) has medical listings (13.23B1 and 13.23B.2) for cervical cancer, referred to as carcinoma or sarcoma of uterine cervix.
Medical listings provide SSA disability examiners with the criteria to evaluate whether someone is eligible for SSDI. If a cancer survivor’s ability to work is so diminished due to radiation, chemotherapy or other treatment, she can still be found disabled without meeting or equating a medical listing.
Common side effects of cervical cancer treatment include extreme fatigue and neuropathy, which can cause extreme pain and prevent someone from using their hands or feet properly.
Of course, thanks to speculums, it is possible to avoid this scenario. Most cervical cancers are detected in women who have never, or have not recently been screened. If you are a woman over 20 and have yet to meet a speculum, consider making a new friend in 2015. It could save your life.
For more information on cancer and SSDI, click here.
Editor’s note: The American Heritage® Medical Dictionary defines speculum as an instrument that is used to dilate the opening of a body cavity for medical examination.