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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.
Follow us on Social Media
January 3, 2013Often accompanied with a rare disease is an overbearing sense of isolation. Our patients are often left thinking that they are alone in their fight. But as many of our active patients will attest, social networking can help curb your solitude. By logging onto our Facebook and Twitter sites, you can interact with others who have your disease. On our Vimeo site, you may find solace in one of our patient’s stories. There are others out there like you, and we’re here to bring you together.
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VimeoPosted in Featured, Media Center, Uncategorized | Tagged Caring Voice Coalition, CVC, Facebook, Social Media, Twitter, vimeo | Leave a comment
Seeking Support
November 28, 2012Whether you’re newly diagnosed with a condition, or have been living with it for years, getting the support you need is crucial to maintaining your best healthy life, both physically and mentally. There are tons of ways to participate in support groups, whether 
it be through an actual physical get-together, online meetings, or even actively participating in message boards.
The benefits of support groups are obvious – being in an environment in which other people understand you and can share helpful advice and motivation is always going to be an aid, however it’s important to see how this engagement can benefit your personal relationships. It can be truly difficult for someone to give the support they want to a person with a chronic illness, because they don’t truly understand or know what to say. And it can be equally hard for the person affected to really share in words what is going on in their minds and with their bodies. Going to an outside source of support can create a better bond between the caregiver and the person who is ill.
Often times, people are hesitant to go to support groups because they feel what they are 
going through is too personal or intimate to share with a room full of strangers. So, if you’re feeling hesitant, think about the benefits of just going and listening. It can be more beneficial than you may believe to just be silent for an hour and soak up what others are saying. And if going to a support session seems like you are relinquishing some of your independence, just remember that everyone needs a helping hand sometimes, just don’t be afraid to take it.
Below are some great resources for support groups from some of our friends in the rare and chronic disease community. Also, don’t hesitate to ask your doctor or medical professional where to look.
Pulmonary Hypertension Association
Pulmonary Hypertension Central
MD Junction Pulmonary Hypertension Online Support Group
Daily Strength Pulmonary Hypertension Online Support Group
Pulmonary Hypertension South Africa
Pulmonary Fibrosis Foundation
Daily Strength Pulmonary Fibrosis Support
Coalition for Pulmonary Fibrosis
MD Junction Pulmonary Fibrosis Online Support Group
Narcolepsy Network
Daily Strength Narcolepsy Online Support Groups
Narcolepsy Online Support Groups
Huntington’s Disease Society of America
Daily Strength Huntington’s Disease Online Support Groups
Huntington’s Disease Lighthouse Families Online Support Groups
Huntington’s Disease Advocacy Center Message Boards
Huntington’s Disease Youth Organization
Infantile Spasms Center
The Infantile Spasms Community Board
Alpha-1 Association
Daily Strength Alpha-1 Online Support Groups
Are there support groups which you have found helpful? Please share with us!
Posted in Caregivers, Diseases, Featured, Media Center, Uncategorized | Tagged chronic illness, Infantile Spasms, narcolepsy, Pulmonary Fibrosis, Pulmonary Hypertension, Support, Support Groups | 3 CommentsRemember
October 26, 2012This week’s blog comes from our friend Scott Chippendale. He graciously allowed us to share his beautiful poem. We hope you enjoy as much as we did. Thank you Scott!
When the golden threads of twilight give way to the cold, lonely grip of night and the world seems to be an uncaring and distant place, lay your head upon your pillow and remember…..
Remember the gentle breath of flower scent…..
Remember the sweet breezes that dance through the leaves…..
Remember the soft lilt of a child’s laughter…..
Remember the cool waters cascading over the rocky stream……
Remember the loving glances of a tender lover…..
Remember the familiar whispers of childhood memories…..
Remember the joy of friendship fulfilled…..
Remember a birdsong melody caught in mid-flight…..
And when the radiant beams of gold peek through the window to wake your spirit with the promise of a new and brighter day…..
You may realize that we are never truly alone as long as we have the chance to remember…..
Cindy’s Story
October 19, 2012I have had a long history of coronary heart disease so it is not uncommon for me to experience angina on a regular basis. However, in November 2009 it became stronger than usual and my doctor ordered first a stress test, then a heart catheterization. The doctor preforming the cath found no real changes in the left side, so he decided to do a right sided cath and check the pulmonary artery pressure, which was elevated but not too high. He told me that I was begining to show signs of pulmonary hypertension.
I was not familiar with this and when I went to the follow up with my doctor he put me on a new medication which I assumed was for the PAH. It wasn’t, so in September 2010 I had to go to the ER due to severe angina again. Another heart cath was done including a right sided one to further assess the pulmonary pressure. It had gone from mild to severe in less than a year with a pressure of 80.
I discussed this with my doctor and asked why the new medication had not worked and I was then told that the medication he put me on was not for the pulmonary hypertension. I asked why he had not addressed the PH and he shrugged and left the room. It was at that time that I found a new cardiologist as well as a pulmonologist who put me on PH meds. I was on the lower dose for a year and a half and there were episodes of shortness of breath and I asked about possibly increasing the dosage, but the doctor did not want to do that. I had planned a trip out of the country for vacation and the doctor did a HAST test and said I was fine to fly without oxygen.
He was wrong. I thought I was going to die the enitre trip. I became very sick and really 
could not participate in my own vacation. By the time I got home I was even sicker. I went to the doctor to explain what had happened and he said it was not from the PH and that I should talk to my cardiologist. It was at that point that I looked for a PH specialist that my insurance accepted and found one in my general area. He is still in the process of adjusting my medications and has done two cardiac caths, one right side the other left side. I have still not been able to return to what I was able to do before the trip and the doctor isn’t sure if I will ever be able to.
When I was put on the PH meds, I had no idea how expensive the medication was and when they told me what my co-pay was I said, “Well they might as well shoot me because there is no way that I can afford that as I am on disability.” It was then that the speciality 
pharmacy referred me to Caring Voice. They made everything so easy and within only a couple of days had me approved for the balance of that year as well as the following year. I cannot thank them enough for making such a difficult time easier as I don’t have to fight to get my medication.
So that’s my story so far. I am still working on getting back to where I was before the trip and I am determined that I will do so. I will just have to take baby steps, but I know myself, and I will get there.
Posted in Diseases, Featured, How We Help, Media Center, Uncategorized | Tagged Angina, Coronary Heart Disease, Hosiptal, Misdiagnosis, Pulmonary Hypertension, Share Your Story, Swollen Ankles | Leave a comment ← Previous post
