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 March 6, 2012
“The child is now near a year old; was a remarkably fine, healthy child when born, and continued to thrive till he was four months old. It was at this time that I first observed slight bobbings of the head forward…he has regained his good looks, and, independent of this affection, is a fine grown child, but he neither possesses the intellectual vivacity or the power of moving his limbs.”
The author was reaching out to his colleagues for possible explanations for a particularly puzzling case.
“As the only case I have witnessed is in my own child, I shall be very grateful to any member of the profession who can give me any information on the subject…”
This was part of the letter written by Dr. W.J. West to the British medical journal The Lancet in 1841, and is considered to be the first reference to what became known as “West syndrome”. It has been referred to as salaam attacks, generalized flexion epilepsy syndrome, Blitz-Nick-Salaam-Krampfe, jackknife spasm, and eclampsia nutans. Today we refer to it as “Infantile spasms”, but the impact on a parent is just as poignant today as it was over 150 years ago. And most parents would call it by a more descriptive name: devastating.
But a diagnosis isn’t the end.
Logan started his journey with a lag in his developmental progress. By nine months, he was assessed as being four or five months behind. He had lost the ability to roll over, smile, and babble. After several medications and their resulting side effects, Logan’s parents were able to get his seizures under control. Logan is now six years old, and is pretty much on track with his peer group. But every time that he writes his name his parents do some silent celebrating for his exceptional achievement.
Nathan and Renee Charlan used their own experiences to create Exceptional Family TV. It is an online series of videos and stories shared by the parents and families of children with special needs. Their journey started with the birth of their son, Zachary. Zachary’s delivery wasn’t the easiest, and he was diagnosed with Cerebral Palsy, cysts on the brain, and some other things, but it was his infantile seizures that tipped his scales. He still receives treatment for his diseases and therapies to aid in his development, but he’s still Nathan and Renee’s very special little boy.
The Onda family learned of infantile spasms when Rocky Onda’s stepdaughter, Mami, was diagnosed. She also had refractory seizures that stunted her development. Her half-brother, Ty, was diagnosed with infantile spasms as a baby, and at age 17 he still lives with tuberous sclerosis, a genetic disorder that causes tumors. Perhaps it was the quick reaction of his parents, or perhaps it was just luck, but Ty is a competitive swimmer, a lifeguard, and is looking forward to college. He thinks that his life (while certainly exceptional) is pretty normal.
Jacob was diagnosed with infantile spasms at six months. After some trial and error with his pediatrician, he was referred to a pediatric neurologist who immediately ordered an EEG and started treatment. His parents will never be the same, but Jacob is now closing the gap with other children his age, and is now relatively normal (but still exceptional).
Not every case of infantile spasms is the same, and not every story has a happy ending. But children who receive the diagnosis are still children. Perhaps they even end up “normal”. But what is normal in a world of exceptional?Posted in Diseases, Featured | Tagged Infantile Spasms | 1 Comment February 7, 2012
We’ve been thrilled with the reaction to our website, and we really enjoy sharing with our many fans on Facebook. We get to share with you tips for healthy living, breaking news about medical research, and stories of hope and courage.
It is the stories of the people that we’ve helped that have inspired us the most.
We shared the story of Justin, and how his mother has struggled to raise him. Kindra is like many other moms, married and raising children, but her story has a twist: In addition to school, groceries, and family, she seeks answers for dealing with Justin’s pachygyria and infantile spasms. Her story touched us, and led us to the story of Marissa and her father’s chronicle of her life.
We got to tell you about Meghan. She was 2 when her father was diagnosed with Huntington’s disease. As she started college and began to plan her own adult life, she also received a diagnosis of the disease. Her father’s illness gave her a 50/50 chance of having it herself, and the coin flipped against her. Meghan didn’t give up, though. She graduated college and is sharing her story on YouTube and is hosting a concert to spread awareness of her disease.
Roberta has a story like many of the people that we talk to. She went through months of illness, testing, misdiagnosis, and was finally told that she had Pulmonary Fibrosis. After reaching several roadblocks in her journey to treatment, she made a right turn and found us on her road. She still has many hills to cross, but breathes easier knowing that she has an advocate in Caring Voice Coalition.
Matthew went from an active lifestyle to one of uncertainty after a diagnosis of Alpha 1. Many people commented on his story. They shared with us their own tales of fear and uncertainty, and of the struggles that they had endured in a quest for treatment. Matthew’s stories put us back in touch with Steven, whose mother died of Alpha 1. We became involved with Steven after his own diagnosis, and it was wonderful to help him, to know that he was hanging in there, and we were honored to make a small dent in his life.
Sometimes it’s hard to convey the message in some of our stories. How does one express a lifetime of chaos, doubt, and failure? Joyce experienced all of these things in her journey through Narcolepsy. The comments to our telling of Joyce’s story conveyed the message: You’re not alone, you’re not crazy, and your perseverance is an inspiration.
We often receive notes and messages from the people that we help that thank us for what we do. We’re referred to as “angels”, “lifesavers”, and “heroes”. That is all very flattering but we sometimes come across someone who puts everything into perspective for us. Such is the case with Dennis.
Dennis is a bona-fide New York City Detective with over 20 years of experience on the beat. He went from a street cop to an undercover officer, and then received his Detective’s shield. He was in Manhattan on September 11, 2001 and spent several grueling months at Ground Zero as he and his comrades combed the wreckage for remains. He was then diagnosed with Pulmonary Hypertension.
Dennis’s story brought comments, encouragement (and some flirting!), from friends, PH sufferers, and cops with PH. People heard his story of courage from just across town in Long Island, from all over America, and from as far away as Scotland.
We wonder how many others there are out there like Dennis, Joyce, Matthew, Roberta, Meghan, and Justin? We’re sure that there are millions of you. And we plan on continuing to provide a voice for you. If you’re someone who is currently working with us, or someone who stumbled across our site, we’d love to hear from you. Contact us and let us share your story.
We empower patients who live with life threatening chronic diseases. The people in the stories that we’ve shared are the heroes.Posted in Diseases, Featured, Uncategorized | Tagged Alpha 1, Contact Us, Huntington's, Infantile Spasms, narcolepsy, PF, PH | Leave a comment February 1, 2012
The first thing that Kindra noticed was that she wasn’t gaining weight. A visit to her doctor confirmed her suspicion. She was definitely heavier at this point during her first pregnancy. A look at the baby boy growing inside of her showed him to be very small for 30 weeks.
Kindra was able to carry her baby, and her family was overjoyed when she gave birth to a son, a brother, and a handful. They named him Justin.
Justin seemed fine. He was a little smaller than the other babies, but everything seemed normal. His parents grew concerned when he didn’t put on weight, and another visit to the doctor brought a diagnosis of pachygyria. It is a rare malformation of the brain that caused Justin to have seizures across one side of his body. Justin’s family watched as he began to experience infantile spasms.
What must it be like to see your child experience this?
A child with infantile spasms will have delays in their development. When other children crawl, yours may not. When other children babble, yours may stay mute. When other children begin to walk, yours may be like Justin; he requires a very special wheelchair.
Imagine life for Justin.
We came across a blog a few weeks ago that is written by a father whose daughter is very much like Justin. He has spent the past four years documenting the painful cycle of diagnosis, treatment, therapy, hope, and very often failure. Marissa’s Bunny is often an outlet for Marissa’s father, but is brutally honest about the challenges that Marissa and her family face.
It can be hard to imagine what is going on for children like Justin and Marissa. While they do have a form of epilepsy, they are still children. Some have compared seizures and spasms as being paralyzed but moving. The activity of the brain during an event has been described as a circuit breaker tripping during an intense storm.
A few folks have had an interesting take on that brain activity. The American Epilepsy Society has a lecture series about research and dealing with epilepsy. At their December meeting they unveiled a piece by the Relanche Ensemble. In a work entitled When the Spirit Catches You, they put a seizure to music. A young composer, Cynthia Folio, who has a daughter with epilepsy, wrote the piece.
At the University of Kansas, three professors also used music to help people “experience” these episodes. Two of the professors work in music theory and composition, and the third is a professor of neurology. They used a piece by Mozart that is then “deconstructed” to demonstrate the random firing of neurons. The resulting “concerto” was performed by the KU orchestra and illustrates the dynamics of a seizure. It became the soundtrack for their film, It is Epilepsy-The Challenges and Promises of Automated Seizure Control.
Having epilepsy, and especially a form like infantile spasms, is most certainly a challenge. For many, hope comes in rare spurts. Perhaps works like these can help us to better understand what living with infantile spasms is like, and perhaps an understanding will lead to breakthroughs in learning. Perhaps children like Justin and Marissa will have hope for a cure in their future.Posted in Diseases, Featured, Uncategorized | Tagged Epilepsy, Infantile Spasms | Leave a comment