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Thursday, February 27, 2014

Reflections on Living with a Rare Disease

By Maya Brown-Zimmerman

Maya Brown-Zimmerman

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with The Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom.

Marfan syndrome is a connective tissue disorder that affects about 1 in every 5,000 people, though only roughly half of affected people are aware they have it.

 

February 28 is Rare Disease Day, a time for all of us living with a rare condition to band together for awareness and improved funding for research initiatives. On a personal level, it prompts me to reflect on what it means to have a rare disorder.

Some days, having a rare disease means loneliness. It’s hard being the only person like you that you know of (especially true for me when I was a teen). Your friends and family might be well-meaning, but they don’t understand your fears or frustrations, what it’s like to live in a body that doesn’t always function like it should. And if your family and friends aren’t supportive, it’s even more difficult.

Some days it’s frustrating. You’re constantly having to educate your doctors. Most of them read a paragraph on your condition sometime in medical school, if that. It gets exhausting to stay one step ahead of the latest treatments, to search out the specialists, and argue it out with your local docs.

But there are some upsides. Your values change. I try to live in the moment. I never let a day go by without my family and friends know what I think about them. I’m truly grateful for my health and work hard to preserve it, while I realize that a working body is something many people my age may take for granted.

I’ve also connected with a rich online community. Social media is a great way for anyone to connect, but it’s particularly vital to the rare disease community. We may not get the in-person support we desire, but we can often find it via Facebook, forums, and blogs. Those friendships are real, and the information exchanged life-enhancing and even life-saving. I help moderate a large Marfan syndrome and related disorders forum, close to 3,500 strong. I’ve been able to “meet” people all over the world that way, occasionally even connecting with locals I didn’t know existed. Those relationships help drive awareness and research efforts, and strengthen me so much. These relationship can bring about sadness, as we lose friends too soon, and I find that I’ve had to learn to deal with loss much earlier than my peers. When all is said and done though, I’m immensely grateful for the friendships I’ve developed through The Marfan Foundation and Facebook.

Do you have a rare disease? What does having a rare disease mean to you?

Posted by: WebMD Blogs at 10:20 am

Friday, October 25, 2013

Fight for Treatment

By Jaime Moy

Jamie Moy and son, Andy

My 15-year-old son Andy and I both suffer from psoriasis and psoriatic arthritis. Psoriasis is a chronic disease of the immune system that appears as red scaly patches on the skin that crack and bleed. For many, the health problems related to the disease go far beyond the skin, causing psoriatic arthritis, heart disease, diabetes, depression, cancer and more. Access to treatment is vital.

For Andy and me, treatment includes chemotherapy and biologic medications. Without them, we would be spending most of our days in wheelchairs. Our days would be consumed with how to get rid of the itchy, burning plaques covering our bodies. We would wake up nightly in pain and feel tired all day. My son would have severe chest and jaw pain that would make eating and breathing very difficult. My eyes would stay inflamed and my vision may be permanently damaged. Thankfully, our medications make it so that we can function almost like normal. For us, treatment has significantly improved our quality of life.

Not everyone is as lucky. Access to care can be tricky, frustrating, and downright exhausting. Don’t give up. Help is available:

  • Review online message boards to find out how others have gained access to care, even when it seemed like a dead end. Share your tips with others who may be experiencing the same roadblocks.
  • Check with your state or local health department to see if they have a Children’s Special Health Care Services (CSHCS) program.  In Michigan, children with chronic health conditions, including psoriasis and psoriatic arthritis, may qualify for Michigan’s Children’s Special Health Care Services, a division of Medicaid. While there are exceptions, CSHCS covers all services and treatments related to Andy’s chronic diseases that our primary health insurance does not cover. This includes all copays and coinsurances required by our primary insurance. There is a fee to join, but it is based upon income and family size.
  • Contact drug manufacturers to find out if they have payment assistance programs to help defray medication costs. Sometimes, the assistance is based on financial need, but other times, it is an enrollment program that every patient can use.
  • If you are lacking in treatment and care of your psoriasis or psoriatic arthritis, contact the National Psoriasis Foundation to find out what options may be available. The organization can help you find doctors, provide information on various treatments, and help you navigate insurance blocks.

Keep searching for alternatives and ways to turn a “no” into a “yes.” Everyone should have access to medical treatments.

On October 29, people from across the globe will unite in a common cause: speaking up and demanding access to fair and affordable treatment for their psoriasis. World Psoriasis Day aims to raise the profile of a condition that needs to be taken more seriously by national and international authorities. Join me and the National Psoriasis Foundation on World Psoriasis Day to make treatments affordable for all. Share your story and take action at www.psoriasis.org/wpd.

 

Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.

Posted by: WebMD Blogs at 11:54 am

Friday, September 20, 2013

When a Condition Runs in the Family

By Jaime Moy

Jamie Moy and son

“So, who in your family has it?” That question plagued me for three years after my son’s diagnosis of psoriasis at age 4 in 2003. Like many autoimmune diseases, psoriasis often runs in families, but no one that I knew had this disease, let alone any one in my family. Still, doctors persisted and asked that question at nearly every appointment.

But, let me back up and start at the beginning of our journey with psoriatic arthritis.

At age 4, my son Andy had a huge circle of what looked like cradle cap on his scalp. You often hear about a mother’s intuition, but it was his father’s feeling of “this just isn’t right” that led us to seek medical treatment for ringworm. After four weeks of intense antibiotics that didn’t clear up his scalp even a little, we turned to a dermatologist. He took one look at Andy and said psoriasis — not ringworm— and a biopsy of his scalp scales proved it.

So, that’s when the big question started: “Who in your family has psoriasis?”

After about six weeks, Andy’s psoriasis went into a full flare, covering most of his body from head to toe. Frequent visits to the dermatologist during the next year were common as we tried unsuccessfully to get his disease in check, and the doctors kept asking that same question.

Then, when Andy was diagnosed with juvenile psoriatic arthritis at age 5, his pediatric rheumatologist asked, “Does anyone in your family have psoriatic arthritis?”

Turns out, I do — only I didn’t know it at the time. It wasn’t until three years after Andy’s diagnosis of psoriasis that I started getting red, scaly spots on my arms, chest and back. I knew right away what it was. Six months later, I received a diagnosis of psoriatic arthritis. It was 2007 and I was 28 years old.

“Fantastic!,” I thought. “I gave both diseases to my son. I’m feeling like the best mom in the world.” And to add to my guilt, my disease was extremely mild and Andy’s was severe. A few topical creams and over the counter anti-inflammatories used occasionally kept my disease in check. But Andy was already taking nine medications, including methotrexate, a low-dose chemotherapy drug given once a week by injection, and a new biologic that was just approved for children.

Over time, I came to realize that I did not give Andy psoriatic arthritis. Sure, I may have inadvertently passed along some of my genes, but it took a trigger like strep throat to start his skin inflammation. In hind sight, we’re pretty sure Andy had signs of arthritis years before his diagnosis. As first-time parents, we just didn’t know what we were witnessing.

Fast forward to spring 2012 when the severity of my disease caught up with Andy’s. Stress triggered a flare and sent my disease out of whack. Now having visible scalp psoriasis and plaque psoriasis on my body, and my arthritis not allowing me to even grip the steering wheel to drive, it was time to step up my treatment. After six months of unsuccessful treatments, I started putting my disease at bay with a biologic.

So, who in my family has it? Me. Along with cousins, uncles and other family members. Not long after my diagnosis, I found out that psoriatic arthritis runs on my biological father’s side of our family tree. He died when I was very young.

If you consider that psoriasis is the number one autoimmune disease in the U.S., affecting 7.5 million Americans, it’s no surprise that my psoriasis “family” now extends coast to coast and even across the world. By seeking support on TalkPsoriasis.org, I know that I am not alone. I know Andy is not alone.

And those feelings of guilt I had of passing on the diseases to my son? They rarely creep up any more because I know there was nothing I could do. Instead of feeling down, we focus on volunteering with the National Psoriasis Foundation and helping other families who are just starting their journeys with these diseases. It’s amazing how much better you feel when you know you are making a difference in others’ lives and helping them to realize that they are not alone.

 

Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.

Posted by: WebMD Blogs at 2:17 pm

Friday, September 13, 2013

Lessons in Strength and Optimism

By Maureen Neville

Maureen Neville

Maureen Neville is the Communications Director for FIRST, Foundation for Ichthyosis & Related Skin Types®. FIRST’s mission is to educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures. Prior to joining FIRST, Maureen’s fifteen-year career spanned the roles of creative writer, marketing strategist, and account manager, in both corporate and ad agency settings.

When someone discovers that I am the Communications Director for FIRST, the Foundation for Ichthyosis & Related Skin Types®, typically, I am greeted with the same three questions: “What is ichthyosis?”, “Is someone in your family affected?” and…“What brought you to FIRST?”  Five months ago, during my very first week at the foundation, I may have responded by saying: ichthyosis is a family of genetic mutations of the skin characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are very rare. And, no, I am not affected, nor do I know anyone affected with the disease – I simply answered an online advertisement for a position that suited my skills and interests. No epic story, I’m afraid.

You see, five months ago, I believed that the equation for rare genetic disease was quite simple: those affected are in the most vulnerable of positions, and those not affected must commit to helping whenever possible. We are the helpers; they need our strength; our optimism; they are the recipients of our compassion and helpfulness. So, I rolled up my sleeves and prepared to assist in anyway I could.

However, what I discovered rather quickly, is that they are, in fact, the strong ones; the courageous. They are the ones living a unique life experience; they will have the lessons to teach.

So what is ichthyosis? It is a genetic skin disorder, yes, but it has also been the catalyst that has lead me on a worldwide journey of meeting the bravest and most inspirational people of my life. Ichthyosis has made their lives challenging, but those affected are most definitely not helpless.

  • Courage: The courageous young mother from Illinois, whose baby was born with Harlequin Ichthyosis, a severe form of ichthyosis whereby those affected are highly susceptible to infection and display dry, reddened skin, which may be covered by large thin scales, and sparse hair. However, this young woman has not only accepted her fate of grueling skin care routines, a daily parade of doctors and therapists, and caring for an infant through unprecedented surgeries – but considers it a wondrous blessing; one that she is delighted to share, daily, with the entire world.
  • Leadership: The young woman from Australia with Netherton Syndrome a form of ichthyosis that presents itself with skin that is very red, scaly and irritated, who has turned her strife into a worldwide “appearance advocacy” effort, changing the way people perceive disability by offering words of empowerment and guidance to all those who “look different” everyday.
  • Enlightenment: The teenager from Canada, also with Netherton Syndrome, who recently shared with us his moment of enlightenment – when after years of questioning his existence, finally realized that because he beat the odds of not “dying by age three,” as doctors had predicted, his life was “not a merely ordinary existence, but a destined one.”
  • Happiness: The twenty-year old woman from Arkansas, with the mile-wide smile, who is known by FIRST to be the second oldest living individual with Harlequin Ichthyosis; who has not let ichthyosis steal a single moment of her life – and in fact, is now joyfully caring for her three month old son.
  • Devotion: And of course, the team of medical doctors, stowed away in a clinical laboratory at Yale University, for nearly 31 years, fueled by one and only one thought: finding a cure.

Each day, they defy the odds and travel their paths alongside a disorder for which, presently, there is no cure. In fact, it is their hope that is the driving force behind the mission of FIRST – to educate, inspire, and connect all those affected by ichthyosis. And it is their hope that expands the definition of ichthyosis to the far corners of the human experience – far beyond the diagnosis of a rare genetic disorder.

So what is ichthyosis? It is a message; a call for human compassion; an invitation to experience the authentic awareness of “other.” It is the doorway to unprecedented medical advancements and, most remarkably, it has become an opportunity for worldwide connections…and the chance for global unity.

Posted by: WebMD Blogs at 12:53 pm

Friday, August 30, 2013

“Behind the Scenes” of Treatment Development

By Christopher P. Austin, M.D.

Christopher P. Austin

Christopher P. Austin, M.D., is director of the National Center for Advancing Translational Sciences at the National Institutes of Health. NCATS aims to transform the translational science process so that new treatments and cures for disease can be delivered to patients faster.

Prior to coming to the National Institutes of Health (NIH), I was a practicing neurologist. I well remember the heart-wrenching experiences of standing at the bedside of patients who had lost the ability to breathe on their own, or worse, and knowing I could not offer more.

Several thousand diseases affect humans, yet fewer than 500 have any effective treatment. A special group of researchers, known as translational scientists, aim to address that gap by taking basic discoveries about the causes of a disease and transforming (or “translating”) that knowledge into a new treatment — such as a drug, medical device, diagnostic test, or behavioral intervention — that tangibly improves human health.

Today, the process of developing a new intervention is slow and expensive: It takes around 14 years and $2 billion or more, and about 95 percent of these attempts fail during development. And even when a new therapy is shown to be effective, it can be challenging to identify and serve all patients who could benefit.

Why all that time and cost? Because many obstacles stand in our path, including:

  • Most people do not understand the process involved in turning a basic laboratory discovery into a new treatment.
  • There are too few opportunities for collaborations between the public and private sectors.
  • Clinical trial designs are often inflexible and inefficient, and there is low patient participation in studies.
  • The regulatory hurdles are sometimes difficult to overcome.

Patients play a critical role in helping to overcome these hurdles because they bring urgency and focus that motivate scientists to find answers to the problems.

By joining and working with scientific and health advocacy organizations, patients can

  • Serve on and support scientific project teams to help NCATS identify translational roadblocks and better understand the needs of people with chronic conditions.
    • A great example is our Therapeutics for Rare and Neglected Diseases (TRND) program, which aims to speed the development of new drugs for rare and neglected diseases.
    • Another is our Office of Rare Diseases Research, which helps patient support groups become partners with NIH, better understand NIH research programs and initiatives, and gain better access to NIH research opportunities
  • Help improve methods to evaluate how new treatments and other interventions affect a patient’s quality of life.
  • Volunteer to help with clinical trial recruitment campaigns.
  • Help support independent research that complements NCATS’ work and thus accelerates health advances.

I am sometimes asked why I am so committed to patient involvement in all aspects of NCATS’ work. The answer is simple: because it speeds the translational process and makes it more efficient and effective — exactly NCATS’ mission. NCATS will continue to evolve over the next several years to address the enormous needs and opportunities in translational science. We are committed to involving patients as partners at every stage of the process so that our efforts provide meaningful benefits to patients in need.

To learn more about NCATS, please visit www.ncats.nih.gov.

 

 

Posted by: WebMD Blogs at 9:54 am

Friday, August 9, 2013

Teaching Your Child to Advocate for Himself

By Jaime Moy

mother and son

As parents, it can be easy to hover over our kids and come to their rescue before they even realize they need rescuing. And, if your child has a chronic illness like my son with juvenile psoriatic arthritis, the temptation is compounded. Chances are, kids with chronic diseases have seen enough pain, needle pokes, and medication side effects at a young age to last a lifetime. The last thing we want is for our children to hurt even more. This is especially true at school.

To protect our kids, we swoop in with our mom and dad superhero capes and become protective force fields that dodge all insensitive questions from classmates and unrealistic demands from teachers. Sooner or later, we have to retire our superhero costumes and accept the fact that we aren’t with our children 24/7 and we can’t save them from every situation. Nor should we.

During a meet and greet before kindergarten, my son was covered nearly head to toe with psoriasis. I tried to get him to wear long sleeves and jeans to hide the plaques so that he wouldn’t have to answer embarrassing questions. He refused and only wanted to wear a T-shirt and shorts. It was one of the hottest days of summer, so you couldn’t blame him.

I took a deep breath, and we went in his classroom to meet his teacher. While I was busy talking to the teacher, I heard another child ask, “What’s that on you?” Before I could even turn into Super Mom, my son said in a matter-of-fact tone, “Oh, it’s ok. It’s psoriasis. It’s kind of like bug bites because the spots are itchy. But you can’t catch it, so it’s ok.” This other little boy and my son became good friends that year.

While you’ll probably wear your Super Mom and Super Dad capes more often in elementary school than in middle school or high school, kids can start advocating for themselves in kindergarten. Just remember that they might not be able to handle everything themselves and will need some coaching along the way. Be on stand-by and ready for action if the time arises. In the meantime, here are some ideas to get your kids empowered:

• Tell them your story. Have your child explain to the class what disease he has and how it makes him feel. It can be intimidating being up in front of the class alone, so bring a friend and do it together. Be sure to explain the disease in your own words, just like my son did with his psoriasis. Older kids can use class assignments like giving a speech or writing a paper to educate the class. Your child will probably get questions, and while some may be insensitive, the majority will just stem from curiosity. The more students know about the disease, the easier it will be for your child. While Psome.org is geared for children with psoriasis and psoriatic arthritis, it offers ideas that students with other diseases can adapt to teach the class.

Get a 504 Plan in place. Parents need to take the lead, but you can request your child be present at the meetings. This is a great way to start communication between the school staff and your student, showing that everyone is on the same page and has the same expectations. That can make it less scary for your child to speak up when he needs more time to finish a test or needs to sit out during gym class, which are part of his accommodations.

• Engage students with disability awareness activities. When my son was in fourth grade, his class attended a disability awareness assembly. The students used canes and blindfolds to better understand what it was like to be blind. They were subjected to loud noises and chaos to demonstrate how it feels to have autism. The students got a real perspective on my son’s disease when they used wheelchairs to navigate an obstacle course to better understand what it was like to not be able to walk. The Center for Disability Leadership in Virginia has a document you can download that includes disability awareness activities for students.

• Get involved with an anti-bullying campaign. Unfortunately, children with chronic diseases can make themselves targets of bullying. Have your child fight back by starting or getting involved with an anti-bullying school campaign. Many schools are taking a zero-tolerance stance on bullying and would welcome a program. StopBullying.gov provides information on how kids can prevent or stop bullying. Being a part of the solution can help kids feel better about the situation.

By giving kids the tools to become advocates for themselves, they will feel more empowered and feel more control over certain aspects of their disease. It will also allow Super Mom and Super Dad to take a day off every now and then.
 
Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.

Posted by: WebMD Blogs at 1:46 pm

Friday, August 2, 2013

The Joy of Raising a Chronically Ill Child

By Shelley Bowen

Shelley Bowen and her son Michael

Shelley Bowen is a founder of the Barth Syndrome Foundation (BSF) and currently serves as Director of Family Services and Physician Awareness.  Both of her sons lost their lives to Barth syndrome (BTHS).  She believes it possible for everyone who has BTHS to have an accurate diagnosis and every parent has the capacity to be transformed from a powerless bystander into an empowered advocate when given the proper tools.

BTHS is a life-threatening, clinically variable genetic condition.  Cardinal characteristics of BTHS include cardiomyopathy, neutropenia, growth delay, under-developed skeletal musculature and muscle weakness.  For more information about Barth syndrome, visit the Barth Syndrome Foundation Website www.barthsyndrome.org.

In the late 1970s, my high school English teacher gave our class an assignment to write an essay about what we wanted to be when we grew up. My female classmates wrote about their aspirations of becoming the first female president, a doctor, a lawyer, a civil rights advocate, a detective, a UN translator, a teacher, a missionary, and an entrepreneur.. Many of these professions were once considered a man’s job. My aspiration was to be a mother. After grading the papers my teacher (who was a wonderful woman) asked to speak with me. She was concerned I was not embracing my full potential. She declared it was possible to be a mother and still have a career. I thoughtfully considered her perspectives and responded: “Our assignment was to select the singular profession we would like to have when we grow up. I agree it is possible to have a career and be a mother, but I believe being a mother encompasses all of the career choices my friends wrote about. Mother Teresa never had children of her own, but, nevertheless she was an admirable woman who mothered thousands. She embodied everything my friends wrote about, and more.” I was surprised to see tears in her eyes as she picked up her red pen, marked through the big red “C” on my paper and replaced it with an even larger “A+.”

I did become a mother to three children. In 1988, my youngest child was admitted to the PICU in critical condition with heart failure. Two weeks later, his brother was admitted with heart failure. My world fell apart. I wasn’t sure what was going on. The doctors were equally stumped. As time went on, new symptoms arose (neutropenia, hypotonia, failure to thrive, small stature and frequent infections), which led the doctors to suspect my boys had some type of X-linked genetic syndrome.

This was not the motherhood I had prepared for. I read all the books on the shelves about raising children, but there wasn’t one entitled The Joy of Raising a Chronically Ill Child. The books prepared one for the joy of parenting a healthy child. In spite of the frequent hospitalizations there was joy, tremendous joy. I felt so ill-equipped. Then I remembered that “A+” I earned on my high school English essay. I had it in me to be the best mother possible.

Because of their challenges, every milestone my boys achieved was so much sweeter. Every word they uttered was music to my ears. Every day I had with them was a day I never took for granted. Barth syndrome claimed Evan’s life in 1990 at the age of 4, and it later claimed Michael’s life when he was 23 years of age. I cherish every moment I had with my boys, because moments are better than “nevers.” In addition to my boys, I am blessed with a beautiful daughter, Alanna. She was diagnosed with mosaic Turner syndrome when she was 13 and has grown into an amazing woman. All three of my children have raised me to become the woman I am today.

When I wrote the essay about what I wanted to be when I grew up, I was just a teenager. I had no idea how prophetic those words would be in defining me. I was a carrier of Barth syndrome and would be the mother of two boys who, ultimately, lost their lives to this disorder. I created a non-profit, Barth Syndrome Foundation, that would help others. I became an advocate for my sons and others who are affected by Barth syndrome. I mastered concepts of human physiology, learning a new language (medical terminology) and translating it into understandable terms in order to help others. I gained entrepreneurial skills to support those who had a rare disorder affecting so few in the world. I have made it my mission to spread awareness about Barth syndrome around the world. I hope that my former teacher would be proud of my accomplishments.

 

Posted by: WebMD Blogs at 11:09 am

Tuesday, July 23, 2013

Set Your Child Up for Success with a 504 Plan

By Jaime Moy

Jamie Moy

Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.

As parents, we want our children to grow up to be happy, self-reliant people who have the tools needed to pursue their dreams. This can be difficult enough with a healthy child, but when your child has a chronic illness, this road can be very bumpy.

I’m a mom with a high-school sophomore who’s had juvenile psoriatic arthritis since kindergarten. I know that each new school year can bring worry over what challenges lay ahead: from teachers who don’t understand the ins and outs of your child’s disease, to administrators who see an honor roll student and question the need for accommodations because he is “doing just fine.”

This is exactly what happened to my son, Andy, as we started the 504 Plan process in third grade. At that time, it was apparent Andy needed extra time and help with writing on standardized tests. At least I thought so. Even with the principal and teacher on our side, some administrators thought Andy needing a 504 Plan was “just silly.” They questioned why he needed “special treatment” because he was a smart kid. What they didn’t see was a child who came home from school exhausted nearly every day from the fatigue of psoriatic arthritis. They didn’t see a child who held back the tears of pain after writing for only 10 minutes. They certainly didn’t see that making small changes on their end was not special treatment. And they did not see that a 504 Plan would create big opportunities for Andy to be successful in school.

I left that initial meeting feeling dumbfounded. I had to regroup and approach the situation from a legal standpoint. And that’s just what I did, quoting text from the law and explaining that we were not asking for special treatment. With some time, a lot of patience, and many school meetings, Andy’s 504 Plan was put in place.

Unfortunately, it wasn’t in time for the third-grade state standardized tests. But, since a 504 Plan follows the student through to graduation, Andy is able to get the accommodations needed for all subsequent testing, and even college placement tests he’ll take in his junior year. And now that Andy’s plan is in place, his yearly 504 Plan updates are easy, and staff is open to all accommodation requests.

If you’re looking to implement a 504 Plan for your child, being prepared will help you avoid some worry and administration roadblocks. Here are a few tips I’ve learned along the way:

Get a 504 Plan in place as early as possible. Section 504 is a federal law that requires public schools to meet the needs of children with disabilities the same as those without disabilities. Many children with chronic illnesses are eligible for a 504 Plan.

504 Plan accommodations vary widely based on the disease and needs of the student. For example, my son needs extra time to take written tests because the arthritis in his hands makes it difficult for him to write more than a few minutes at time without taking a break. But, a child with diabetes should be allowed to eat a snack immediately when experiencing hypoglycemia.

Educate the educators. Don’t assume teachers understand the disease and how it impacts your child’s school life. Set up a meeting with the teacher before school starts. Most educators will welcome the knowledge you can provide to make the class easier for them and your child. Many reputable health agencies like the National Psoriasis Foundation, which helps people with psoriasis and psoriatic arthritis, offer free disease pamphlets that you can download and share with teachers.

Ask your child for input. When they are little, you may need to fill in some gaps, but even in first grade, my son was able to tell me it was painful to sit on tile floor for assemblies. I asked that he be able to sit in a chair near the other students. This small change made a huge difference.

Communication is key. Ask teachers and administrators the best way to communicate with them, and whenever possible, reach them via that method. For us, elementary school teachers welcomed phone calls, but in high school, email became the primary method.

Know when to be flexible and when to be firm. Even when you think you have the system worked out, challenges will come up. Stay calm. Going off the deep end will not help you or your child. Work to reach a compromise and keep good relationships intact. There are 504 Plan safeguards in place and reminding the school of these will sometimes be all it takes to get your child the accommodations needed.

Find support. You don’t have to feel alone in a process that can feel overwhelming. Connect with other parents who have already put 504 Plans in place. Find out what worked and didn’t work for them. The National Psoriasis Foundation’s Talk Psoriasis message board is a great place to get started and ask for 504 Plan advice: And once you’ve put your child’s 504 Plan in place, share your ideas with others just starting the process.

 

Posted by: WebMD Blogs at 10:41 am

Friday, July 19, 2013

6 Signs It’s Time to Ditch Your Doctor

By Maya Brown-Zimmerman

waiting room

As patients with chronic illness, we’re well-accustomed to going to the doctor. Many of us have had great medical teams, but I know we’ve all had the experience of seeing a medical professional and leaving upset. Obviously, communication is a two-way street and we need to do our part as patients, as well as have reasonable expectations for our providers. Sometimes though, it becomes necessary to fire a doctor and move on.

Here are some hints it might be time to change doctors:

1)  Your doctor is unapologetic about a mistake. Doctors are humans and therefore mistakes are going to happen. If your doctor seems distressed about the error and changes how they operate to guard against another mistake, great! But if your doctor can’t understand why you’re upset, downplays the error or your feelings, and doesn’t make any relevant changes, it may be time to give them the pink slip.

2)  Your doctor routinely keeps you waiting past your appointment time and you don’t get your fair share of time. I have a couple of doctors who I know will run late, because they give their undivided attention to every patient. I’m ok waiting an hour, because I know I won’t be rushed when it’s my turn. But if your doctor is keeping you waiting without reason, that shows a lack of respect for your time.

3)  Your doctor can’t seem to remember basic facts about your treatment. Doctors have a lot of patients, so of course they aren’t going to remember every detail about your life. But if it’s been a few months and your doctor is still asking why you take beta blockers, or suggests cutting out dairy every appointment, when they’re the ones who discovered your child had a dairy intolerance in the first place, well, Houston, we have a problem.

4)  Your doctor is inaccessible after hours. I get that doctors don’t typically get paid for talking on the phone, but if it’s urgent, there should be a mechanism for getting help. I had an instance where we were about to go out of town and I had a question about my son’s medication. I was told my doctor’s policy was that questions about medication were only answered in-office: period. Now how to get help after hours is a question I ask when interviewing potential doctors.

5)  Your doctor is not knowledgeable about your condition and unwilling to learn. I have Marfan syndrome, a rare connective tissue disorder. I don’t expect every doctor I come in contact with to be an expert, or even to know what it is. But, if we’re going to be partners in keeping me healthy they have got to be willing to learn: from me, experts in the field, and from our national foundation.

6)  Your doctor is dismissive of your concerns. If you have a question, you deserve to have it answered honestly. You know your body the best, and medical professionals should respect that. For example, a friend of mine ran into trouble when a doctor insisted on ordering a drug she’d reported caused her to stop breathing because the doctor didn’t believe that was a possible side effect. Whether it’s over a major issue like that, or something less serious, mutual respect is an important aspect of the patient-caregiver relationship.

Are there things I’ve missed? Have you ever fired a doctor?

Posted by: WebMD Blogs at 12:29 pm

Friday, June 28, 2013

A Mile in Someone Else’s Shoes

By Thomas Orton

When you live with a chronic disease, keeping perspective requires will power and imagination… and sometimes a reminder of the unseen burdens that others are carrying.

Heading out the front door of my building on a drizzling early spring morning four years ago, I spotted a street person named Harper who had been panhandling in my neighborhood for about two months.

He had been terrorizing everyone who crossed his path, bullying, hurling insults and demanding money. I had managed to avoid him – until that morning. I remember thinking, I can’t deal with this. Meeting with Harper was the last thing I needed – I had enough on my mind.

“I need to talk to you,” Harper said. It was less a request than a demand.

I tried ignoring him, but he stepped in my way. He began a rambling narrative of one disaster following another – and in all of which Harper himself figured as the ultimate victim, trodden and oppressed by people he imagined were just like me, wealthy, shallow, thoughtlessly free of worry.

Little do you know, I thought.

Two months earlier, I had received what I thought was a death sentence: I’d been diagnosed with Parkinson ’s disease. As I listened to Harper’s rant, I began to grow angry.

“I can’t listen to this,” I said loudly.

I dug into my jeans pocket, pulled out a fistful of change and held it out to him.

“Here, take it,” I said impatiently. When he didn’t move I said defiantly, “Come on. I don’t have all day.” My voice quaked. Harper reached out slowly. Instead of taking the money, he suddenly batted my hand hard. The coins flew everywhere, smacking a nearby window and ringing wildly on the pavement. Startled, I took a step back. Harper moved forward, brought his face within inches of mine and shouted, “My head is full of trains, and they are always on time!”

Shaken, frightened, I made my way awkwardly around him, got in my car and got out of there.

By the time I reached the grocery store, the fright had begun to wear off. I was fuming. Harper’s rage, and the humiliating dramas he created from it, seemed rehearsed. I was convinced that he got perverse pleasure from trampling on the dignity of people he considered more fortunate than he. I didn’t deserve it: I had a dread disease. The unfairness made me angry. I began rehearsing a scenario of my own, taking the wind out of Harper’s sails by telling him what I was up against – the constant dread, the deepening depression, the hopelessness. You can do something about what’s wrong with you, I imagined shouting back at him. Try walking a mile in my shoes!

But as I drove home, I realized that shouting wouldn’t have done anything but make me look stupid. It wouldn’t have made any difference to Harper.

Harper was nowhere to be seen when I reached home again. I parked and walked along the sidewalk where our confrontation had taken place, replaying the scene in my head, and hearing again his strange declaration about the trains. What if trains actually were actually were roaring through his head, always “on time?” Suppose he never got relief from that merciless schedule? Would I trade my fate for screaming locomotives and panhandling? Not on your life.

I felt a wave of pity for the man. I hadn’t worked through the self-hatred that Parkinson’s visits on you, not by a long shot. But for the first time in weeks, I didn’t envy someone just because he or she didn’t have what I had. I actually felt fortunate to be who I was. If there was one person who made me feel that way, chances are that there were others, perhaps crowds of them, people whom the world called “normal” – people certainly more normal than either Harper or me, and who, snug and safe inside lives they believed to be bulletproof, would be surprised to learn they weren’t as lucky as they thought.

 

 

Thomas Orton is a professional novelist and freelance writer. He is author of the blog Rogue Rhythm: Parkinson’s and the Rest of Life. His novel, The Lost Glass Plates of Wilfred Eng, earned critical praise nationwide. He is also the author of Kenneth Callahan, an art book about the renowned Northwest painter. As a freelance writer, Orton has worked extensively in the medical and health care fields. He was diagnosed with Parkinson’s in 2009.

 

Posted by: WebMD Blogs at 3:35 pm

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