Welcome to our site. This is a place for the people who love a child with a rare disease,disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones. We have felt fear and triumph, desperation and hope. I have never felt more supported, or more isolated. I hope to use this website as a place to share information, support and stories. This website and community will grow through your contributions. So please, consider sharing information or a story or building a profile. Thank you. xo, nora
|
|||||
|
Login to connect with Others on Rare Disease Support: Powered by |
Those of you who spend any time in hospitals know that while the relationship you have with the specialist is of critical importance. The life of your child is often quite literally in their hands and you must have the utmost trust in their judgement and in your ability to community care effectively with that person. (In our case we are lucky enough to work with the supremely talented Dr. Hartnick!) But during a 24-hour stay in the hospital, your surgeon spends an hour or two in the OR with your child and and if you are lucky, another 30 minutes talking with you about your child. The rest of the time is spent in the care of nurses. And we have had some AMAZING nurses at MEEI… people characterized by compassion, intellectual curiosity and protectiveness of you and your family. When I am at MEEI I feel supported by the nurses as though they are our advocates, care takers and friends. In our very abnormal reality, our relationship with nurses can at times make our stay in the hospital enjoyable! So thank you to all nurses who take the time to treat patients and their families as allies. Thank you amy, annie, mary, sylvia, jennifer, nancy, joan, cheryl, shanna and all of the other pediatric and OR nurses who make such a positive difference in our lives. And thank you to the wonderful nurses in my personal life…dad, barbara, nadine, sheddy, jerry…. I know our lives and others’ benefit from the care you provide. Here is a quote that I read in a research article that reminded me why nurses are so important to the quality of our health care system:
Morse, J. M., & Niehaus, L. (2007). Combining qualitative and quantitative methods for mixed-method designs. In J. Wuest, & P. L. Munhall (Eds.), Nursing research: A qualitative perspective (pp. 541) If you haven’t you should! You can track your health information on-line and get links to health information that has some credibility. Unfortunately my health provider has not partnered with Google so I can’t seamlessly integrate with Google. I have to scan and upload documents. But it allows me to keep all of our records in one location and give access to a health care provider should I choose. Because I don’t know about you, but we have been to so many hospitals and so many specialists that I have two 3-ring binders full of medical records for Ayrie and I know that I am still missing a lot! Click here or read below for the latest update on Google Health.
I am white and educated. I have certain privilege that come along with these attributes. But I also made below the poverty line last year, my children are on Medicaid and I’m a single mom. These are attribute that put me squarely in the “have- not” category in the world of privilege and power transactions. I think about this a lot in health care. Every ’strike’ against you makes it that much harder for you to get your child the best care. And when your child has a rare disease, a fight is a given. There is no easy path. Anything that makes the fight harder, anything that put barriers in your way, is not only unfortunate but there can be dire consequences. I just read a passage that resonated with me and I want to share it with you. It’s written by an anthropologist who learns about health care issues from the perspectives of families by talking to them, accompanying them to doctors’ visits and videotaping interactions. She had this to say:
Mattingly, C. (2006). Pocahontas goes to the clinic: Popular culture as lingua franca in a cultural borderland. American Anthropologist, 108(3), 494. One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may have been throwing tantrums the day before but the minute we board that plane to fly for Boston he is the epitome of good behavior. Ayrie just turned four last week and we’ve had a lot of conversations about growing up. He hasn’t been able to talk above a whisper for about five months. Here’s an exchange that we had today:
Have you had conversations with your child that make you realize how much they are mature beyond their age? tell us about it. xo nora
Through my lived experience over the past two years I have learned that families with a child with a rare disease need a lot of support. Nuclear families often live apart from their extended families. Hospitals can not meet all of a families’ outpatient needs. Church membership and attendance has declined. Schools are unsure how to meet the special needs of children and their families. So the support needs to come from a new source. Or perhaps from an old source, community, a construct that we currently find ourselves disconnected from in this society. But I know for certain is that one nuclear family can not and should not have to meet all of the needs they have. Families need financial, emotional, practical and informational support and yet there is no wide-spread existing support system. What I am proposing is not a new program, but a new way to think about relationships between people in communities. But let me digress for a moment to tell you that my other passion is education. I was a high school teacher, a charter school administrator and a program manager for a high school program with the Student Conservation Association and hold a MA in Research Methods from the University of Pittsburgh’s School of Education. When my son was diagnosed with a rare disease, JORRP, my world turned upside down and suddenly the field of education seemed less important and my son’s life and my family’s functioning became the only things that were important. But as you live life with your child’s rare and unpredictable disease, you experience moments of crisis and despair, but also clarity and purpose. I found my mind making connections between the experience I was having with the health care system and my passion for improving the educational system. I capitalized ’Education’ and ‘Health’ in the because I have experienced them both to be systems that are so important to people’s lives, yet so large and sometimes impossible to navigate that they ultimately lose the ability to effectively meet people’s needs. There is high quality and high access to both in pockets, but just as many gaps. I see a lot if similarities between the angst a parent must feel when they are unable to find a school that is safe, rigorous and nurturing for their child and the despair that a parent feels when they can’t get the insurance they need or a doctor that is able to effectively treat their child with skill and compassion. In both cases the quality of life of that child, and therefor the quality of life of that family, are significantly impacted. In the most extreme cases, the actual life of that child is in danger. There are schools where extreme violence and rape occurs on school grounds. There are children that have a reduced life span because they can not access the best doctor for their particular medical condition. And in both cases a parent can do everything within their power and ultimately feel quite powerless with the needs of their child continuing to go unmet. So I again come to the proposition of a community response. A tipping point where people connect with others and help them meet their needs, be those needs educational, health related, or other. It probably seems unlikey that the Harlem Children’s Zone be quoted in a blog post for rare disease day, but Geoffry Canada hold a similar vision and he’s proving that it can work. He is changing a community through changed norms, expectations and systems of support. He uses an unofficial 65% rule which says that if you can change the behavior of 65% of the people in a community, you can reach a tipping point and create a new normal. As you read the excerpt below, think about what a similar vision would look like for meeting people’s health related needs. If you are inspired or have ideas, please leave a comment. xo and all the best to you and your family, Nora Quoted from PEN Weekly News Blast: As part of its issue devoted to an in-depth look at the Harlem Children’s Zone (HCZ), City Limits interviewed its founder and director, Geoffrey Canada. In the question-and-answer, Canada explained that the only marker of success for the antipoverty initiative is whether its participants graduate from college. All other measures are “interim.” He concedes that by this metric, it’s difficult to tell if HCZ is working 10 years through a 20-year cycle. However, the program uses these same interim tests to monitor outcomes at each step, starting with its first, Baby College. Canada has set a 65 percent positive student outcome as the universal goal — the so-called tipping point — but says there is no science behind this number; it’s common sense. “Kids do what their friends do… If you get a whole bunch of kids doing positive things instead of negative things, should you expect that to have an impact on other kids? Absolutely.” HCZ has certain underpinnings that cohere into a philosophy, Canada explains. “One is that you create pipelines for kids and you keep them in it, you don’t stop.” Another is working on a large scale: “If you have 5,000 kids in trouble, and you serve 200 kids, you’re not going to change the outcome.” Third and fourth are constant evaluation of outcomes, and rebuilding the community that hosts your program. “I want for my kids what every middle-class person wants,” says Canada. “That’s my science… When the middle class don’t want it, I don’t want it.” click here to read the original article. A repost from Science Blog. I thought this was a nice summary of why rare disease day exists, and why ‘rare’ adds a dimension of complexity to disease identification, treatment and management.
My friend, Julie Wight, just introduced me to the idea of narrative medicine. I am reading my first article and I think I might be hooked! Part of what interests me is the idea that mind and body are not separate. I know about my mind, my emotions, my fears… and there are some things I know about my body… but there are other things that I don’t know about my body, things that only the doctor can know and has to tell me (I have a heart murmer? Really? or I have diabetes? etc.). By entering into a different type of a relationship with the doctor where we put together all of the pieces to understand the complete story, my experience of sickness and healing will be quite different. And by telling and story and being heard, I create a deeper level of trust with my physician, allowing me to share some of the burden. This is what has happened to me with my son’s surgeon. I feel that he listens and tries to understand. Since we started to go to him I feel that my emotional weight is a little bit lighter. The first article I’ve read about Narrative Medicine is: Charon, R. (2009). Narrative medicine as witness for the self-telling body. Journal of Applied Communication Research, 37(2), 118-131. Here are some quotes that resonated with me:
Here’s your opportunity to write a post for Rare Disease Support and be a part of something bigger! It’s pretty simple. You send me a blog post (anywhere from 10 to 10,000 words about anything related to rare diseases, from the perspectives of moms, dads, kids, family, friends, doctors, pharmacists, etc), and I will post your blog entry on this website. You can choose to post your name, or you can ask me to make your post anonymous. You can even use pseudonyms. After I have posted everyone’s blog entries I will send links to the Children’s Rare Disease Network to be included in the “Blog for Rare” project. Here is the invitation that the Children’s Rare Disease Network sent to me:
Please consider adding your voice to this day! You can really write about anything, emotions, treatment, ‘the system’, growth, frustrations, joy, etc. I need the bog entries by February 17th. xo and thank you!! nora There is a new clinical trial for propranalol, the drug that my son is taking for RPR. It says invitation only but if you are interested, your hospital may be able to work with one of the trial sites near you. If you want to try propranalol with your child, it’s worth asking about! The details are listed here. Moving Ahead Together: Celebrating the Legacy, Shaping the Future of Maternal and Child Health The goal of the 2010 AMCHP Conference is to advance the health of women, children and families by promoting innovations in MCH policy and programs, sharing best practices, developing state MCH leadership, and fostering multidisciplinary approaches to address key health issues impacting MCH. Attendees will describe cutting edge maternal and child health programs, methods, and policies from across the country; engage in networking opportunities with MCH professionals, researchers and government leaders to share ideas, information, and experiences; and identify practices and policies designed to strengthen partnerships between state MCH programs and families. Click here to download the Exhibitor Prospectus. For more information please contact the Conference Department at amchpexhibits@conferencemanagers.com or (703) 964-1240 x 11. Register today online to attend the conference. If you have any questions, please contact Registration Manager Lynn Parrazzo,lynnporrazzo@conferencemanagers.com or call AMCHP’s Conference Department at (703) 964-1240. |
||||
|
© 2010 Rare Disease Support Register http://rarediseasesupport.org/feed/ - All Rights Reserved |
|||||
