Would you be willing to take a moment and share your story with us, and how you came to Caring Voice Coalition? Continue reading →Posted in About Us, Featured, Media Center | Tagged Caring Voice Coalition, CVC, Share Your Story, Support | Leave a comment November 28, 2012
Whether 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
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
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 Comments June 7, 2012
Last week, we added a new feature to our site. We asked you to share your story with us, so that we may share it with others to help the newly diagnosed or those who have been battling for years. We hope you find comfort in reading stories and knowing you’re not alone in your fight. This week’s story comes from Irene:
My story is probably not much different than anyone else’s, but I think it’s horrendous given my background.
First, I have been working since I was 10 years old, I am now almost 54. I am the poster child for independent, self-sufficient people. I was a single mom and raised my son alone, even while working three different shifts a week for 1 1/2 years (police work). I put myself through college early on and ended up with an Associate’s Degree. I finished my Bachelor’s Degree 2 years ago. I should point out that I was obese at this time and had been for many years and always it seems had blood pressure problems, I was taking blood pressure medication for years, but every time I would go see the doctor it would be really high, which we all attributed to “white coat syndrome” as I’m petrified of doctors, needles, etc.
Roughly two years ago, I started feeling wiped out all the time, and to my horror I was starting to have trouble walking more than a few feet at a time. I was out of breath with the slightest activity. I started to fail at taking care of myself in the grooming and hygiene department because honestly it would wipe me out for a whole day. I had a very physical job which was becoming more and more of an issue for me. I still maintained my workload and got things done, but I couldn’t give the property I was managing the attention it truly needed. I lived in a nice condo which I rented, finally paid my car off and finally after what seemed like forever, I was actually starting to get a grip on my finances. As I’m sure many know, being a single mom with no financial help is a struggle.
I started to cough a lot and along with that came episodes of passing out. It happened randomly, even while driving! I went to my primary care Physician who said it was Asthma. He treated me appropriately for that, but I wasn’t getting any better. I have a long history of respiratory issues, but nothing that wasn’t fixed with an antibiotic or two. Finally, after researching my symptoms, I went back to my Doctor and told him I thought maybe we should look at congestive heart failure. He sent me to a Cardiologist and CHF was confirmed. She started to treat me, but she also recommended I see a Pulmonologist to try and determine what may be causing the CHF.
The Pulmonologist put me through a battery of tests, all except the right heart cath which I cannot do, because my chances of complications being under anesthesia of any kind; even twilight gas or the like. All of the testing pointed to Pulmonary Arterial
Hypertension. The pressures in my lungs were off the charts, and my Brain Natriuretic Peptide results were in the mid 500′s. Not good. I started on a higher dose of medicine for the bp, medicine for the edema around my ankles and belly and two oral
therapies for the PH. I started to see a shrink as well because I did my research on PH and the current prognosis of the disease. So, in the meantime, I lost my job, lost my condo, had to sell all my belongings except the car which I needed for all the
doctor’s appointments I have.
“Miss Independent” was forced to move in with her son, daughter-in-law and toddler granddaughter. Their home is on the small side and while I am extremely grateful I have my wonderful son and his family, I now find myself living in an 8 x 10 room. To go
from being on my own for so long to a bustling, noisy household has been a difficult adjustment. I love my family so it is ok, but it is hard for me. Thank God I have qualified for disability, but I still insist on paying for rent, groceries, utilities, etc. I will not burden my son and his young family any more than I already am. Besides, they can’t afford to totally care for me. I have car insurance, a cell phone bill, which I need otherwise I would toss the thing; I pay COBRA premiums which are ridiculously high as I’m sure you all know.
Remember I said I finished my degree? Well I did that on student loans which are now due. I pay for my monthly medications, hospital and doctor office bills that my insurance does not cover. I have a couple of credit cards that I do not use, but have been paying off for years. I had to use those to survive after I lost my job, as I still had a lease to fulfill on the condo etc.
So fast forward to a couple of months ago. I honestly do not remember how I came across Caring Voice Coalition, but I did somehow and I went on their website and read all about them. These people are God-sent lifesavers! I applied for help and was
contacted immediately by Kristin. I was approved for help and it could not have come at a better time. They have saved my life; literally, as I was falling into such a deep depression about how the heck I was going to pay for everything, that I even worried
myself. I can breathe a little easier knowing CVC is there for me and all of the rest of you.
This organization is by far the best thing out there, and every one I have spoken with at CVC is caring, warm and truly engaged in my well-being. I can’t thank God enough for them. I can’t thank them enough for them! I wish I could win the lotto, not for me, but for my son and his family and for CVC to which I would donate a nice tidy sum! I would also donate to NIH and other research facilities in order to come up with a cure for PH and other lung diseases and disorders.
That’s my story, most of it anyway. Caring Voice are angels on earth and I am so glad they are out there for us. Spread the word about them – let’s do what we can to keep them going. Without them, an awful lot of us would be in big trouble. Thank you CVC!!
We are very grateful to Irene for taking the time to share her story. If you’d like to share yours, we would love to hear it!Posted in Diseases, Featured, Media Center, Uncategorized | Tagged Caring Voice, CVC, Pulmonary Hypertension, Share Your Story, Support | 2 Comments May 9, 2012
The Pulmonary Hypertension Association’s motto is Empowered by hope, a brief summation that speaks volumes. It says that, while they do indeed help thousands of patients with Pulmonary Hypertension, thereby making them powerful, they are fueled by the hope that their patients exude. It is their patient community that motivates them to do what they’ve done for more than 20 years. Hope, through help.
PHA’s mission is to find methods to prevent and cure Pulmonary Hypertension (PH), and to also provide for the PH community through support, education, advocacy and awareness. An arduous undertaking, considering that there are currently upwards of 30,000 Americans living with PH today.
Our community is a huge tent for anyone affected by the disease.
Soon after Dorothy Olson was diagnosed with PH and given two years to live, she was discouraged yet determined. Inspiration paved way. She was connected with Teresa Knazik, a fellow PH patient. Letters were written, pen-pal groups were formed – an organization was shaped. And soon after Olson, Knazik, Pat Paton and Judy Simpson sat around a Florida kitchen table to share everything they knew about PH, the Pulmonary Hypertension Association was born.
“From our earliest days, PHA has provided opportunities for support and connection, patient (and now medical) education, and integration of medical professionals into our organization,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension Association, and Adrienne Dern, PHA Vice President.
What makes PHA so innovative, Castro and Dern said, is their ability to connect patients with caregivers and medical professionals alike. PHA currently hosts more than 235 support groups across the country, bringing people together to support a shared cause.
“Our community is a huge tent for anyone affected by the disease,” Castro and Dern said. “[PHA] creates a strategic alliance between the families affected by the disease and the medical professionals who treat them.”
Although PHA started out as a single support group, the internet has allowed them to broaden their scope. In addition to increasing the amount of services to its core constituencies, PHA has implanted a number of online communities to help them reach more people.
“We have numerous online communities,” Castro and Dern said. “Including e-mail groups, a message board, daily online chats, and our latest offering – PH E-mail Mentors, which enable patients and caregivers to find someone like themselves and engage in a one-on-one e-mail relationship.”
In 2009, PHA moved away from its “one size fits all” programming and developed targeted programs for specific patient groups, a shift that PHA said has significantly enhanced what they can offer to their patients.
Today, PHA, at the helm of President and CEO Rino Aldrighetti, prides themselves on bringing people together. Whether it’s through an online chat or a kitchen table discussion, PHA, as their website states, turns strangers into friends.
“We have stayed true to our roots,” Castro and Dern said. “[We’ve] continued – but not altered – the vision and ingenuity of our founders. Just as they did then, we work every day to end isolation and seek a cure for Pulmonary Hypertension. So while the scale and scope have greatly expanded, we continue to follow their lead.”Posted in Diseases, Featured, Media Center | Tagged Advice, Aid, Community, Help, Pulmonary Hypertension Association, Support | 2 Comments