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Health care scams are on the rise and can take many forms—in person, over the phone, via mail and online. New government programs have recently been put in place to help prevent, detect, and punish such scams.
However, it’s important to remember that con artists can be very creative in coming up with new ways to defraud their victims, and extremely persuasive, catching even the savviest consumers off-guard.
Here are some common health care scams to look out for, along with tips for protecting your personal information, and reporting health care fraud.
The Affordable Care Act
The Federal Trade Commission, the Better Business Bureau, and AARP warn about scams that claim association with the Affordable Care Act (ACA) and its Health Insurance Marketplace. Scammers have been taking advantage of confusion about health care reform and calling claiming to be government representatives issuing mandatory new national medical cards.
If you get a call from someone purporting to represent Medicare or the government, hang up immediately. Don’t rely on caller ID to correctly identify the caller; con artists can falsify caller ID numbers.
It’s important to know that:
Scammers try to convince you to act now, says Tracey Thomas, Attorney, Division of Marketing Practices, Federal Trade Commission, in order to get your money before you have time to stop and think.
“So remember that date: October 1, 2013. That’s the first time anyone, anywhere can sign up for health insurance through the Health Insurance Marketplace under the Affordable Care Act. Anyone who claims to be able to enroll you sooner is trying to scam you,” advises Thomas. To report anyone who claims to be able to sign you up sooner, go to www.ftccomplaintassistant.gov.
For up-to-date information on the Affordable Care Act and the Health Insurance Marketplace, go to: www.healthcare.gov/index.html
Other Common Health Care Scams
The Department of Health and Human Services, the Department of Justice, and the FBI warn that scammers are engaging in the following types of health care fraud:
Next week, look for Part Two of “Recognizing, Avoiding, and Reporting Health Care Scams” on www.caringvoice.org. We’re here to help!Posted in About Us, Diseases, Featured, Uncategorized | Tagged AARP, Affordable Care Act, Federal Trade Commission, Health Care Scams, Medicare, scams | Leave a comment June 20, 2013
Top Tips from the Experts
With major changes in health care prompted by the Affordable Care Act, it’s easy to get confused. That why it’s more important than ever for patients, providers, and caregivers to know how to recognize health care and health insurance scams. We’ve included tips from experts on combating and reporting fraud, including helpful questions for identifying scams.
In CVC Community magazine’s summer issue, CVC Health Care Attorney Stephanie Posuniak examines the growing health care role of patient navigators in the article “On Your Behalf.” In the article excerpt below, Posuniak outlines ways to help determine whether a patient navigator is legitimate.
How Can I Be Sure a Patient Navigator is Authentic?
Some organizations or individuals may pose as authentic patient navigators when, in fact, they intend to defraud you. How can you tell the difference between a real patient advocate and a con artist? For official navigators (who assist with the Exchange), the first place to go is your state’s Exchange website, which should have a list of approved official navigators.
If you do not have access to the internet, contact the call center associated with your state’s Exchange. For unofficial navigators (who are not directly associated with the Exchange), you can also consult your local Better Business Bureau’s website to verify credibility.
If you do not have access to the internet, here are five questions to ask before commissioning a patient navigator:
1) Who initiated the contact? Patient navigators rarely cold call individuals; so, be wary of external phone calls indicating that you must obtain a “national medical card” or the like.
2) Is the navigator willing to send me additional information about its organization? Legitimate businesses understand the need for more information and will be happy to comply. A navigator who does not want to send information about itself is suspect.
3) Will the navigator let me call her back? A patient navigator will not decline this request. If the person tries to threaten or pressure you, something is wrong.
4) Has my doctor heard of this organization? Most health care providers are aware of well-known patient advocacy organizations.
For more on patient navigators, see Posuniak’s “On Your Behalf” in CVC’s Community magazine’s summer issue, out soon.
Preventing Medicare Fraud
To help stop Medicare fraud, the Department of Health and Human Services and the Department of Justice warn you to be suspicious of doctors, health care providers, or suppliers who:
For more information on common scams and identity theft, go to www.stopmedicarefraud.gov/preventfraud/scams-identity-theft
FBI Tips for Avoiding Health Care Fraud or Health Insurance Fraud
The FBI’s Common Fraud Schemes website www.fbi.gov/scams-safety/fraud
provides information and tips on avoiding some of the most common scams that the FBI investigates, including health care fraud, health insurance fraud and identity theft. The FBI advises:
To report suspected Medicare errors, fraud, or abuse, contact either:
HHS Office of Inspector General
Online: Report Fraud Online
Centers for Medicare & Medicaid Services
Senior Medicare Patrols:
The Senior Medicare Patrol (SMP) are highly trained volunteers who show Medicare and Medicaid recipients how to protect against, detect, and report fraud, errors, and abuse through outreach, counseling, and education.
For information on the Senior Medicare Patrol, go to www.aoa.gov/AoA_programs/Elder_Rights/SMP/index.aspx
Most Wanted Health Care Fraud Fugitives
The Office of Inspector General (OIG) is seeking more than 170 fugitives on health care fraud and abuse related charges. Click https://oig.hhs.gov/fraud/fugitives to view OIG’s Most Wanted Health Care Fugitives, as well as those recently captured.Posted in About Us, Diseases, Featured, Uncategorized | Tagged AARP, Affordable Care Act, Federal Trade Commission, Health Care Scams, Medicare, scams | Leave a comment June 14, 2013
In 1997, when I was 49, I got up one morning, showered, and got dressed … almost. I tried to put on my shoes, but found that my feet had swollen too much overnight to fit into any of them. I called my doctor, who thought I was retaining water, and gave me a diuretic. It didn’t help at all.
He referred me to a rheumatologist, which was a good start. Unfortunately, though, the rheumatologist was to retire in three weeks, so he wasn’t too invested in me. He told me that I definitely had some “auto-immune process” going on, which might take several months to sort out, but that the treatment would initially be the same: methotrexate. When I asked what methotrexate was, he replied that it was usually used for cancer, and told me to “take it or leave it.” I decided to leave it, and to tackle the issue holistically.
This led to my second unfortunate event: A doctor I pursued, who had received extensive media coverage, turned out to be a quack. It took me about 18 months to come to grips with the fact that I was slowly getting worse. I was now unable to step off a curb unaided, or to dress myself without assistance.
Dry, darkened, shiny, and tight skin covered my face, arms, hands, and legs up to mid-thigh. My fingers were slightly curled, and I had six finger ulcers on the three longest fingers of each hand, which made using them to do almost anything nearly impossible. Raynaud’s syndrome, one of the most frequent scleroderma symptoms, caused my fingers and feet to turn purple when the temperature changed from cool to warm, or vice versa. I experienced acid reflux so intense that I learned to fall asleep in a recliner every night. Every joint in my body ached, and it hurt when I got into bed.
I used to teach elementary school. When I first got sick, school had been in session for about three days. I struggled to make it to winter break by taking a sick day every Wednesday, and sleeping (and eating a little) between Tuesday evening and Thursday morning. Every Thursday I would cry as I got ready for school, because I didn’t know how I could make it to the end of the week.
Finally, in February, 1999, I was referred to a great rheumatologist with a background in scleroderma. I walked into her office, and she told me as I was sitting down that I had systemic scleroderma. She started me on (you guessed it) methotrexate, as well as different medications to help relieve reflux symptoms, soften my skin, and ease the pain. I slowly started to improve. I no longer have finger ulcers, and for no apparent reason, my hands stabilized, with very little curvature to my fingers.
Because I have systemic scleroderma, all the extra collagen my body produces has to go somewhere. It goes into a lot of my other body systems—my heart, lungs, skin, and gastrointestinal tract seem to be getting a lot, judging from the assorted problems I’ve dealt with over the ensuing years. One is the facial deformities that can occur as the skin starts to relax. It can cause the lips to almost disappear and small lines to form around the mouth, often referred to as “purse-string mouth.” I’m still surprised when I see a photo of myself, as I only recognize my face through my eyes and nose.
It is estimated that approximately 25 percent of scleroderma patients will develop pulmonary hypertension. I fell into that group. I am fortunate that I am presently able to treat my PH with oral medications. Many of my fellow patients must be hooked up through a subcutaneous line to a pump that they wear 24/7. I pray I won’t ever have to experience that, but only time will tell.
I no longer teach school. My last day was that winter break in 1997. I wanted to continue being productive, so, once I felt a little better, I got a Little Sister in the Big Brother/Big Sister program. I am still in touch with her today. As she got older, I joined an adult literacy program, through which I have taught and mentored a woman from Africa for about eight years now. I am also the support group leader of the pulmonary hypertension group in Tucson, and the co-leader of the scleroderma group. Helping other people makes my struggles more worthwhile.
If you have a story that you’d like to share with CVC, email us at http://www.caringvoice.org/2013/05/share-your-story-2/. Your words can give support to others and let them know that they’re not alone.Posted in About Us, Diseases, Featured | Tagged rheumatologist, scleroderma, systemic | 20 Comments June 7, 2013
Be the 1,350th new Like on Caring Voice Coalition’s Facebook page, and win a cool, colorful journal to help you think, create, and record! This premium journal, bound in Italian leatherette, features 256 ruled interior pages, a satin ribbon marker, and magnetic closure.
If you’ve already Liked CVC on Facebook, invite your friends, family, and colleagues to join CVC’s social media community, and one could be the winner!
Join the community and keep connected at www.facebook.com/CaringVoiceCoalition!Posted in About Us, Featured, Uncategorized | Tagged Facebook, journal | Leave a comment June 5, 2013
Affecting approximately 300,000 people across the U.S., scleroderma is a chronic connective tissue disease in which the immune system attacks its own body, producing extra collagen. It is painful, often progressive, and can be fatal. Some medications and treatments can help with certain symptoms, but there is no known cure for scleroderma. Symptoms and effects can vary, and diagnosis can be difficult. Early and correct diagnosis by a qualified physician, often a rheumatologist, can help minimize progression and disability. Scleroderma can develop in any age group. It is not contagious.
From the Greek words meaning “hard skin,” scleroderma can cause a thickening and tightening of the skin, and serious damage to internal organs, including the heart, lungs, and kidneys. Early symptoms can include fingers that are very sensitive to cold, change color in response to stress or cold, and that become stiff and swollen, known as Raynaud’s phenomenon. (Although most people with scleroderma have Raynaud’s phenomenon, most people with Raynaud’s phenomenon do not develop scleroderma.)
In its fifteenth year, the Danvers, Mass.-based Scleroderma Foundation, a national nonprofit with 24 chapters and support groups across the country, provides support, education, and research about scleroderma. To boost awareness this spring, The Scleroderma Foundation and its Tri-State Chapter are running a 15-second video on a 520-square-foot digital billboard in Times Square from April 1 through June 30, 2013. Can’t make it to Manhattan? No worries: Click here to view this short, but powerful video.
In the Spring 2013 issue of CVC’s Community magazine, Scleroderma Foundation Communications Manager, Christina Relacion, describes how three women living with scleroderma empowered themselves—as well as their caregivers, friends, and family—through online support and resources: Click here to read their compelling stories and learn more about getting support through social media.
Diseases, Featured, How We Help | Tagged Christina Relacion, Community magazine, Johns Hopkins Scleroderma Center, National Institutes of Health, rheumatologist, scleroderma, Scleroderma Foundation | 2 Comments May 15, 2013
Would you like to share your story and how you came to Caring Voice Coalition with others who can learn from your experiences? Continue reading →Posted in About Us, Featured, Media Center | Tagged Caring Voice Coalition, CVC, Share Your Story, Support | Leave a comment May 9, 2013
Jean Wittie shared her story with us back in November of 2012 for our special edition of Community magazine, In Their Words. Her story detailed how Huntington’s disease has affected her family. Below is her story.
My husband Frank and I have been married for over 30 years. We have a blended family of seven children, six grand children and five great grandchildren. The two oldest boys are my boys from my first marriage, and they are the ones who have been diagnosed.
Todd is the younger one, he’s 43. He began having some problems – facial twitching and jerking – in 2009. He’d always had problems with his thyroid, and his doctor at the time thought all of Todd’s problems were related to that. The doctor kept raising and raising the medication, until he took Todd completely off it. Nothing worked.
I finally took him to my doctor, who thought he had MS. We went to see a neurologist who ordered an MRI and genetic tests. When the diagnosis came back, it blindsided us. We had no idea that there was anything like this anywhere.
After Todd was diagnosed, his doctor ordered testing for Todd’s older brother, Dale. Dale had some symptoms, but they weren’t very pronounced, so he thought he was home free. But just before Christmas 2010, his diagnosis came back as positive for HD.
So I set out to learn as much as I could about Huntington’s. I found the UC San Diego Autism Center of Excellence and they were so encouraging. They invited Todd and myself to their research symposium, where we met researchers, officials with the Huntington’s Disease Society of America, and families with HD. It was all very encouraging.
As a result of that symposium, we were finally able to get both Todd and Dale on a medication that helped restore their quality of life.
Dale lives in his own home with his adult son, daughter and her family. Dale’s daughter and her family moved back to Oregon to be closer to Dale and help out.
Unfortunately, Dale’s daughter was diagnosed positive in March. Dale’s son, and Todd’s two daughters have not yet been tested. Todd’s two girls live in Alaska and want to be tested but they are working their way through the state’s medical system now. Dale’s son is practicing avoidance behavior – he’ll get to it, but for right now, he does not want to be tested.
My husband Frank has always been supportive of the boys and of me. He’s the one that keeps reminding me to be patient when I need to be.
I still work and I go to school, so Todd is at home alone during the day. I make meals that will be easy for him to eat, he takes care of the yard, feeds the dogs… both my husband and I want Todd to have as normal a life while he still can.
Our extended family is huge, and Todd and Dale have all of the love and support our family can offer. Various family members have attended the conferences, support groups, walks – everyone in the family is there for Todd and Dale.
I truly feel that if I stay positive and persevere, then there will be a cure. We all have to have the courage and the hope to keep going. You have to keep fighting.
So that’s my story.Diseases, Featured, How We Help | Tagged disease, Huntington's, Huntington's Disease | Leave a comment May 6, 2013
Several months ago Caring Voice Coalition participated in a survey rating the best nonprofits to work for. It is with pride and pleasure that we would like to announce that CVC has been ranked in the top 50 for the second year in a row.
This year CVC ranked #33 out of 50 overall organizations and #18 in the Medium Organization category. The NonProfit Times, who conducted the survey, included an article listing the results of the survey (click here to view the full article).Posted in About Us, Diseases, Featured | Leave a comment May 1, 2013
A question CVC’s legal department is often asked is whether or not patients need a Power of Attorney (POA). But before I can answer that, I’d like you to understand what a POA is and whether one is appropriate for you.
What is a Power of Attorney?
A Power of Attorney is an agreement between two people: a principal and an agent. The principal, or almost always the patient, grants powers to the agent, or the caregiver, to make certain decisions on the patient’s behalf. These decisions can be based upon a range of issues, but they are typically financial or medical decisions. A POA steps in when the patient is no longer able to make decisions on his or her own behalf, and it allows the caregiver to designate who will make those decisions. Without a POA, a court or state may be able to designate someone to make decisions on the patient’s behalf. The person appointed might not be the person the patient would choose to make his decisions.
As an example, married couple John and Peggy choose to draft durable Powers of Attorney granting one another the authority to make financial and health care decisions on one another’s behalf. John discovers that he is diagnosed with Huntington’s Disease and eventually loses capacity to make decisions on his own. Because of the POA, Peggy can make decisions for John. Without that POA, their home state of Idaho could determine that Peggy is not the best person to make those decisions and instead designate John’s cousin, Nell, to make those decisions.
Do I need a Power of Attorney?
Probably. Most people who own property or have any money will need to make financial decisions, or difficult health care decisions later in life. If this is the case for you, you may want to consider having a POA in place.
When you draft a Power of Attorney, you must have the capacity to do so. Capacity is essentially the ability to make or enter into a legal relationship the same way someone with a sound mind would. Everyone is assumed to have a sound mind and be of normal intelligence. Someone can try to prove that you no longer have capacity. However, to do that, they must have specific and realistic proof.
So, if your illness is expected to progress in a way that may cause you to lose capacity, it is better to draft a POA sooner rather than later. You can speak to an attorney about tactics like videotaping the signing, getting one or many doctors’ statements of your competence, and/or having multiple witnesses at the signing of your POA to further support your capacity.
A POA must be durable to last after a patient loses his capacity. A durable POA will remain intact after the patient is no longer able to enter into legal relationships. A POA will terminate at death, even if it is durable.
The laws that govern Powers of Attorney vary state by state. Many people will need separate POAs for health and financial issues. Consult an attorney in your state to answer any specific questions you have and to draft a POA for you. If this is not financially possible for you, many state Departments of Health have free Medical Powers of Attorney or Health Care Proxies available through their offices. Contact your local Department of Health to request a copy of their form and for any specific instructions to complete.
If your family does draft a Power of Attorney, please send a copy to CVC. We can keep it on file in case the caregiver must sign on behalf of the patient when completing a new Terms and Conditions form or the incredibly important Renewal to receive a grant in
the new year.
The information presented in our website’s “Legal Corner” section is intended to provide information of general interest to the public and should not be relied upon as legal advice or counsel. This information should not serve as the basis for any legal decision by you. The information offered is not intended to create an attorney-client relationship, and your visit to our “Legal Corner” shall not be deemed to create such a relationship. Information posted in our “Legal Corner” may not reflect recent legal developments or decisions and therefore website visitors should consult an attorney if you have legal issues requiring attention.
CVC Health Care Attorney Kristin Lough uses her background in finance and the law to help CVC patients. As part of the Appeals and Disability team, Kristin helps assist patients with insurance appeals and with applying for Social Security Disability.Posted in Caregivers, Diseases, Featured, How We Help | Tagged Appeals, Disability, law, legal, Lough, POA, Power or Attorney | Leave a comment April 23, 2013
Explain the disease.
Children may not understand disease names or their associated symptoms, and the word “disease” may make them worry that it is something they can catch.
Try not to go overboard, but address common fears.
Carefully explain that your loved one isn’t acting this way because she doesn’t love the child anymore. It is just that he or she has trouble doing some things now.
Even if your child doesn’t ask, make sure he or she knows that the illness is not contagious.
Emphasize that the disease has nothing to do with germs and cannot be “caught” by being near a loved one.
This information was provided courtesy of Lift Caregiving.
Posted in About Us, Diseases, Featured | Tagged children, disease, illness, lift caregiving | Leave a comment April 18, 2013
In today’s world, the ever-increasing need for technology and immediate information has dramatically changed the landscape of managing one’s health. In a report published in January 2013 by the Pew Internet & American Life Project, 72 percent of American Internet users have gone online to look for some kind of health information in the past year. The report also found that women are more likely than men to head to cyberspace to investigate potential health issues.
Frequently, people start looking for more information with a search through Google, Bing or Wikipedia. Beyond searching for a diagnosis or information about a specific disease, people also have turned to the Web for support. Niche communities that focus on an array of health issues, such as HealthCentral, Patients Like Me, Inspire or Treatment Diaries, invite individuals to share their personal stories about living with chronic illnesses. For many, social media, especially places like Facebook, have turned into a place for support and comfort. The web offers a virtual support system for many people, battling both common and rare conditions.
Scleroderma is a relatively unknown disease that affects approximately 300,000 Americans. Most general practitioners will never see a patient affected by the disease. The same is true in far too many instances of people living with scleroderma. In my role at the Scleroderma Foundation, I increase connections of people living with the disease and help them better access the essential resources they need so they can be a more involved member of their care team. In two years, our Facebook community has tripled in size to more than 10,750 users – the largest and most active of its kind among similar scleroderma organizations. In addition, many of our 24 chapters and 150 support groups across the country manage their own social networking communities, further engaging the scleroderma community.
I attribute the Scleroderma Foundation’s online successes to several factors. First, patients are becoming more active participants in their treatment plans, and secondly, online tools like Facebook offer an improved access to health information.
“I initially reached out to online resources when I recognized that no one in my world ‘got it,’” said Teri H., a registered nurse from Texas who has lupus and scleroderma. Teri said she joined our social community because, “I have felt I was in desperate situations with these illnesses in the last couple of years and I found great comfort in being able to read others’ posts as well as be able to share on different websites.”
There are many instances where people are unable to attend a support group in their own town. A disease like scleroderma can limit one’s mobility. The psychological effects of the disease also make it hard for some to go out in public. A virtual support group offers a unique opportunity to connect with others in an intimate and personal manner.
“Social media is like a huge support group. You may not have the intimacy of being in a small group but… I have actually become friends with people who have scleroderma and are from other countries,” said Helene G., who runs a scleroderma support group in San Diego and belongs to the Foundation’s Facebook community.
When Lora K. was first diagnosed with scleroderma, she and her husband initially turned to medical professionals for support. She was surprised at what happened.
“To our shock and grave disappointment, we discovered they offered no help,” Lora said. “To our continued amazement, they offered no information. Not even a suggestion as to where we might find information,” she said. “We had no choice but to seek help and information on our own.”
Teri, Helene and Lora’s stories are just the beginning of how some people living with scleroderma – along with their caregivers, friends and family members – have gone online to empower themselves with information.
In May 2009, we began a partnership with Inspire. With their help, our global online discussion board has grown from 2,300 users in 2010, to more than 6,700 users in 2012. Last year, there were 2,877 discussions started with nearly 30,000 replies from discussion board members.
Working closely with our Programs and Services team, we review journal entries and discussion posts. The message board’s posts help us generate content for our publications and our annual patient education conference. It steers us toward what issues people are currently experiencing and ensures that we have a pulse on common concerns.
In the coming years, the trend of people turning to the web for health information will continue to grow. As access to mobile devices becomes easier and less cost-prohibitive, online communities will see membership numbers surge. I predict that more medical professionals will take part in online discussions as their comfort levels and confidence increase, as well. This will help change the dynamic in the benchside setting, causing doctors and patients to be engaged members in one’s care plan.
Christina Relacion is the Communications Manager at the Scleroderma Foundation’s National Office, located in metro Boston. Her primary interests include website production and social media. Her work has been recognized by the Wisconsin Healthcare Public Relations and Marketing Society, the Association of Marketing and Communications Professionals and other professional organizations. Christina has presented across the country on topics including social media, public relations and website management.Posted in Caregivers, Featured, Uncategorized | Tagged chronic, health, media, Relacion, social | 2 Comments April 8, 2013
Rino Aldrighetti was hired as the first part-time professional staff member of the Pulmonary Hypertension Association. In the years since, he’s assumed the title of President of the organization, enhanced PHA’s scope, built a full-time staff, and advocated tirelessly to increase awareness about pulmonary hypertension. Here, Community talks to Rino about where PHA has been, and where it’s going.
Describe the journey in becoming President of PHA.
In 1998, seven years after PHA’s founding, the organization’s volunteer leadership decided to build a staff. Their first step was to advertise for a part-time executive director. They put an ad in the Chronicle of Philanthropy, running it once.
At the time they were doing this, I was a non-profit consultant. I had just finished a five-year project for one of my larger clients and was getting ready to do what I always did when I was preparing to think through a new direction, begin a three-day retreat. The day before I was to begin, I picked up the Chronicle of Philanthropy and saw a brief two-line ad: “Small rare disease association looking for part-time executive director”.
I responded and was invited to meet with an extraordinary person, Bonnie Dukart, who was PHA’s president. Bonnie, who had been diagnosed with PH shortly after graduating from college, explained to me that the goal was to bring on a person who could increase PHA’s budget so that the organization could do more. Following that meeting, I had the opportunity to meet the board and quickly became aware that I was in the presence of heroes.
I soon accepted the board’s offer and became PHA’s first (part-time) professional staff person in 1999. By 2001, we had increased PHA’s income from $132,000 to $1.1 million and built a small part-time staff. The board then invited me to lead a new full-time staff. The work has always been a privilege.
What are some of the challenges you face when trying to increase awareness or support a rare disease like pulmonary hypertension?
Our greatest challenge in raising awareness about PH is our relatively small numbers. A rare disease in the U.S. is defined as one with 200,000 or fewer patients. PH has 20,000 to 30,000 diagnosed patients.
Given that reality, each person’s decision to make a difference is of enormous importance. At PHA, our mantra is that any person whose life is touched by PH has the right to fight back as much or as little as health and interest allow. Over and over again we have seen what the ability to influence positive change means in people’s lives. We may have 30,000 patients living with this disease, but each has family members and friends, neighbors and medical professionals who care and are ready to help. Harnessing that energy with a strong community is what makes a real difference.
What are some of your goals for PHA for 2013?
In this economic and political environment, organizations that cannot adapt will ultimately decline. At PHA, we have been working hard over the past year to introduce new ways to support our research and patient-serving programs. In December, we opened PHA’s first three chapters – in New York, Chicago and San Francisco. This is a pilot for us to build a professional events structure that will develop a larger population of supporters for our core programming in communities around the country. If we are successful in our first year, we will implement a five-year program to expand the network. It’s an ambitious effort to not only assure our sustainability, but to make sure that our ability to serve the needs of our community is not limited by funding restrictions.
PHA’s early diagnosis program, Sometimes It’s PH Campaign, was launched at our 2012 International Conference and has generated early excitement in the U.S. and other nations. It came about following research indicating that despite all the increased visibility for PH during the past 20 years, the time from onset of symptoms to point of diagnosis has not reduced. This may not have been a problem two decades ago when there were no treatments; however, today with nine treatments and more on the way, getting patients diagnosed so that they can take advantage of these treatments is hugely important.
Why should a PH patient join PHA?
PHA is more than an organization. It’s a community, a place where people understand and help each other get through the challenges of this difficult disease. The strength of the community has value for the individuals who choose to join. It also has value for the whole, for all who live with the disease through our collective ability to develop public awareness, drive advocacy and sustain helping networks. These are things we can only do together and that will create opportunities for better tomorrows for everyone.Posted in Diseases, Featured, Media Center | Tagged PHA, Pulmonary Hypertension, Rino Aldrighetti | 1 Comment March 30, 2013
If you need to contact us, please use the chat feature in Cloud 9 (click here to log into the Cloud 9 portal). Or, use the LIVE CHAT feature located at the top of our website’s home page. Thank you for your patience and we apologize for the inconvenience.Posted in About Us, Featured | Leave a comment March 26, 2013
Today marks the fifth annual Purple Day, a grassroots campaign aimed at bringing global awareness to epilepsy. Purple Day was born from the motivation of an epileptic young woman named Cassidy Megan. In 2008, Cassidy started Purple Day “in an effort to dispel myths and inform those with seizures that they are not alone.”
Since that time, Purple Day has amassed an impressive social media following, as well as various business and individual partners, all helping spread awareness about a misunderstood condition.
Here are a handful of quick facts about epilepsy, featured on the organization’s website:
–Forgetting to take prescribed seizure medication
–Lack of sleep
–Stress, excitement, emotional upset
–Menstrual cycle / hormonal changes
–Illness or fever
–Low seizure medication levels
–Medications other than prescribed seizure medication
–Flickering lights of computers, television, videos, etc., and sometimes even bright sunlight
–Excessive alcohol consumption and subsequent withdrawal
When I was born, everything was fine. But when my umbilical cord fell off, it just kept bleeding and bleeding and bleeding. My mom kept taking me back to the doctor, but no doctor knew what was going on.
So after six or seven doctor visits, my mother had had enough and said she wasn’t leaving until they could tell her what was wrong with me. The doctor did some research and said he thought I had hemophilia. He recommended a blood transfusion, and I’ve been receiving them every two weeks throughout my life.
When I was younger, they’d have to shave the side of my head, because our transfusions were given in the head.
I say “our” because my brother, who was born four years after me, was born with the same condition.
Growing up, I wasn’t allowed to play any sports that could affect my joints. Softball, basketball – couldn’t do it. Really, anything that required strenuous activity were things the doctor told me I could not do.
It was embarrassing in school. You have to tell people about it and explain why you can’t participate in things. No one knows about Factor XIII. No one talks about it. There is still hardly anything on the Internet about it.
It is an invisible disease, sure. The main thing people notice is that I bruise really easily. It’s not a typical, small bruise; they are large, hematoma bruises. But other than that, you can’t tell anything is wrong with me.
I just have to be careful and take precaution. As I get older, I have more problems with my joints. I have to exercise my joints to keep them strong, as a way of avoiding bleeds. But I have to be very careful how hard I push it. It’s like walking around on eggshells every day. If I hit myself with something, or drop a box on my foot, you never know exactly what it’s going to lead to.
I didn’t like talking about Factor XIII when I was younger, but I’ve become a very open person, and I like educating people about it now. People are typically intrigued about the disease because it’s so different.
My doctor once told me that I would never be able to have children. Now I have three kids. I’ve received several calls from people with Factor XIII, wondering how it is possible to have biological children. The risks involved are so great, so people are really curious.
My first two labors went very well, but the third one was very difficult. It got to a point where we just didn’t know how it would end up. But thankfully, everything was all right. And that’s basically how I have to live: a little unsure about what is going to happen on any given day, but remaining happy and thankful for all that I do have.
What Is Factor XIII?
Factor XIII is the protein responsible for stabilizing the formation of a blood clot. In the absence of Factor XIII, a clot will still develop but it will remain unstable. When someone has a deficiency of Factor XIII, the tenuously formed clot will eventually break down and cause recurrent bleeds.
Soft tissue bruising
Newborns may have umbilical cord bleeding
Diagnosis is made by normal coagulation screening tests and a detailed family history.
Posted in Diseases, Featured, Supported Diseases | Tagged blood, Congenital Factor XIII Deficiency, Hukill | Leave a comment ← Previous post Next post →