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| In This Issue |
June 2009 |
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Undiagnosed Disease Registry
Social Networking |
Undiagnosed Disease Registry Recently in the House of Representatives, John Carter introduced a bill called the Undiagnosed Disease Registry Act of 2009. The bill also carries the name of a child who lost his battle to an undiagnosed disease, The Charles August Long "Cal" Act. Heather, Cal's mom, started talking with her local representatives about her experience with her son's illness. Heathers efforts has brought this bill to the US House of Representatives. You can read the language in the bill H.R. 2538. If you support this bill let your representative know. You can find your representative at the US House website, just type in your zip code. SWAN USA and The Children's Rare Disease Network are working together on a program called SOLVE. It is all about arming yourself with the information that will make it easier to share with medical professionals. Having the proper information to share will make the chances of getting a proper diagnosis easier and leave less room for miscommunication. S Start Researching & Compiling - You must understand all of your child’s medical case facts before a complex medical case can be solved. Collect ALL medical records from blood workups to scans and put them into a binder or scan them into the computer. While this is time consuming, it is very important. Continue to add to the binder over time.O Overview Summary – Write a two page summary of your child’s medical case history from birth to present. Tell a complete story and include all major medical events (seizures, XXX, XXX, XXX). Have a friend or family member read your summary to make sure your outline makes sense. Once you have your summary complete, start keeping a daily journal and continue to update your summary over time.L List the facts – Focus on the facts and details! Provide information on tests your child has had to date, doctors and hospitals you have seen and visited, phone numbers/emails of your doctors, insurance coverage, etc. List all medications your child takes (dosages, schedules, what has worked or not worked to date).V Video your child – include video coverage of symptoms, behaviors that you don’t understand, facial features, physical anomalies, your child’s interactions with siblings, with their surroundings, anything that could be relevant or a clue to help form a diagnosis. E Engage The Experts – You will now have a complete history to bring to experts to help them diagnose your child. This is critical and ongoing, and you will have to create these for each of your appointments. To have an electronic file that you could send to experts around the world is critical as well. If you have been successful in any of these area's with sharing your child's information, we would love to hear from you about your experience. With technology today families are using video to tell the story of their child. It can be a very useful way to express your situation to others, allowing them to see your love and passion for your child. It can also be used as a tool to show some episodes that you are unable to figure out. After you get the video together by using some software you can then upload it to YouTube. SWAN USA does have a YouTube channel, and we share video's that we have come across as well as our own. Visit SWAN USA's YouTube Channel! Recently we added a video about Cole, he is about 15 months old and has endured a lot in his life. He will likely have many more challenges in his life, it may help in the care of the future challenges if he had a diagnosis. Cole's story doesn't differ much from the many families of SWAN. Watch Cole's Video! This article's title reads "Mysterious Ailments May Be The Result Of Undiagnosed Genetic Defects". It also share information about the Biochemical Genetics Program at NewYork-Presbyterian Morgan Stanley Children's Hospital. read more A five year old child is struck with MS. This wasn't the families first experience with MS. Children are likely to go undiagnosed with MS, because many professional aren't aware that MS can affect children. read more A 20 year old college student with dystonia, is the first to attend the college with this type of condition. She was 13 when her symptoms started and has no diagnosis for the condition. read more Recognizing and Managing Seizures Within the School Setting, August 11 7:00 to 9:30 PM EDTExceptional Parent Live Online will be presenting an online seminar about recognizing and managing seizures within the school setting. They encourage educator, school administration, parents and medical providers to attend this event. The focus will be on seizure readiness plans in the school setting and will include information about medication administration and safety of medication.
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Without A Name USA |
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