adkmom Posted February 21, 2011 Report Share Posted February 21, 2011 Hi all, As many of you know, May is National Lyme Disease Awareness Month. That month provides a great opportunity to promote Lyme Disease and raise awareness. Myself and another mom are starting to organize an awareness campaign, focusing specifically on children and Lyme Disease. (While many groups may promote awareness of LD, few to none focus solely on children diagnosed with LD.) The stories that we're pitching to the media will include children who have tested positive for Lyme; who presented with NOT the typical rash or physical symptoms but with cognitive/neuropsychiatric symptoms. The stories some moms have already shared regarding their child's struggles due to personality/behavioral changes can provide an extremely emotional and moving message. (Also -- an educational message: you do not have to have a RASH to have this disease...many children are misdiagnosed because of the behavioral component.) Our plan is to "pitch" media releases with localized stories to several of the top newspapers within the top 10 states with Lyme Disease cases. The core message is: LD is easy to get, can be hard to treat, children make up the highest percentage of infections, children's symptoms can often be different than the typical physical signs most have read about. We hope that with these stories, our children's "voices" will be heard. They are, in essence, the forgotten victims of a disease that's created such controversy. And they need to be heard. We can't do this alone. If you would like to share your child's story with the media, please PM me and I can provide further info. We're focusing first on the print media, so your child's name can be withheld from the article, if you wish. It is their story, NOT their name that's important to the reporter. Again, we're looking for children who presented with BEHAVIORAL/NEUROPSYCH symptoms. Also, if you wish to help us in other ways, we'll gladly accept! If you live in a top 10 state and would like to be the point person and gather media sources for that state, please PM me as well. Thanks for reading. Darlene PS - In pre-mommy days, I worked as a reporter. But I'm very new on this Lyme journey, ds4 diagnosed only a few months back. So, I welcome your knowledge, guidance and input in making this awareness campaign a success. Link to comment Share on other sites More sharing options...
cobbiemommy Posted February 22, 2011 Report Share Posted February 22, 2011 This is an interesting idea. How do you go about telling your child's story, but not mentioning their names?? Link to comment Share on other sites More sharing options...
adkmom Posted February 22, 2011 Author Report Share Posted February 22, 2011 This is an interesting idea. How do you go about telling your child's story, but not mentioning their names?? The names are changed. The story is told. However, if neighbors or school friends know "your story", then of course they would recognize your family. The general public would not. Hope that makes sense. darlene Link to comment Share on other sites More sharing options...
sf_mom Posted February 22, 2011 Report Share Posted February 22, 2011 Happy to help and share our story. I thought you were in PR but having been a reporter makes total sense. -Wendy Link to comment Share on other sites More sharing options...
adkmom Posted February 22, 2011 Author Report Share Posted February 22, 2011 Happy to help and share our story. I thought you were in PR but having been a reporter makes total sense. -Wendy Hi Wendy, Was waiting for your reply. And figured you'd be jumping in. You've been so helpful to many of the moms here. Kmom (Kristy) suggested contacting you. Are you in San Fran? darlene Link to comment Share on other sites More sharing options...
pixiesmommy Posted February 22, 2011 Report Share Posted February 22, 2011 I'm torn about this because we also have a dx of PANDAS, but I would love to help if I can. Link to comment Share on other sites More sharing options...
sf_mom Posted February 22, 2011 Report Share Posted February 22, 2011 (edited) Lived in SF proper for 20 years but now in a suburb 35 minutes out of the city. If its any help... I have a very good friend who works for AP in NYC. He could help with getting story out on the wire. Edited February 22, 2011 by SF Mom Link to comment Share on other sites More sharing options...
adkmom Posted February 22, 2011 Author Report Share Posted February 22, 2011 Lived in SF proper for 20 years but now in a suburb 35 minutes out of the city. If its any help... I have a very good friend who works for AP in NYC. He could help with getting story out on the wire. That would be great. I can write up a specific news release for that wire. Link to comment Share on other sites More sharing options...
NancyD Posted February 22, 2011 Report Share Posted February 22, 2011 Happy to help. I'm in MA. Nancy Link to comment Share on other sites More sharing options...
lyme_mom Posted February 22, 2011 Report Share Posted February 22, 2011 Hi all, As many of you know, May is National Lyme Disease Awareness Month. That month provides a great opportunity to promote Lyme Disease and raise awareness. Myself and another mom are starting to organize an awareness campaign, focusing specifically on children and Lyme Disease. (While many groups may promote awareness of LD, few to none focus solely on children diagnosed with LD.) The stories that we're pitching to the media will include children who have tested positive for Lyme; who presented with NOT the typical rash or physical symptoms but with cognitive/neuropsychiatric symptoms. The stories some moms have already shared regarding their child's struggles due to personality/behavioral changes can provide an extremely emotional and moving message. (Also -- an educational message: you do not have to have a RASH to have this disease...many children are misdiagnosed because of the behavioral component.) Our plan is to "pitch" media releases with localized stories to several of the top newspapers within the top 10 states with Lyme Disease cases. The core message is: LD is easy to get, can be hard to treat, children make up the highest percentage of infections, children's symptoms can often be different than the typical physical signs most have read about. We hope that with these stories, our children's "voices" will be heard. They are, in essence, the forgotten victims of a disease that's created such controversy. And they need to be heard. We can't do this alone. If you would like to share your child's story with the media, please PM me and I can provide further info. We're focusing first on the print media, so your child's name can be withheld from the article, if you wish. It is their story, NOT their name that's important to the reporter. Again, we're looking for children who presented with BEHAVIORAL/NEUROPSYCH symptoms. Also, if you wish to help us in other ways, we'll gladly accept! If you live in a top 10 state and would like to be the point person and gather media sources for that state, please PM me as well. Thanks for reading. Darlene Great idea. It's true that kids are suffering disproportionately due to doctor ignorance and the variety of symptoms that can be due to lyme. My kids did not have neuro psyche symptoms (except my son was irritable when he was very sick) but I have a relative who I believe has severe neuro psyche problems due to these infections. We are still working on proving it is a TBD for her but later this could be a story. I'd like to read any stories that come out of this! PS - In pre-mommy days, I worked as a reporter. But I'm very new on this Lyme journey, ds4 diagnosed only a few months back. So, I welcome your knowledge, guidance and input in making this awareness campaign a success. Link to comment Share on other sites More sharing options...
adkmom Posted February 22, 2011 Author Report Share Posted February 22, 2011 Lymemom- Which state are you in? If it's a leading state, maybe we could tweek the press release for your situation, if it presented as physical symptoms? Did you catch it early? thanks for responding! darlene Hi all, As many of you know, May is National Lyme Disease Awareness Month. That month provides a great opportunity to promote Lyme Disease and raise awareness. Myself and another mom are starting to organize an awareness campaign, focusing specifically on children and Lyme Disease. (While many groups may promote awareness of LD, few to none focus solely on children diagnosed with LD.) The stories that we're pitching to the media will include children who have tested positive for Lyme; who presented with NOT the typical rash or physical symptoms but with cognitive/neuropsychiatric symptoms. The stories some moms have already shared regarding their child's struggles due to personality/behavioral changes can provide an extremely emotional and moving message. (Also -- an educational message: you do not have to have a RASH to have this disease...many children are misdiagnosed because of the behavioral component.) Our plan is to "pitch" media releases with localized stories to several of the top newspapers within the top 10 states with Lyme Disease cases. The core message is: LD is easy to get, can be hard to treat, children make up the highest percentage of infections, children's symptoms can often be different than the typical physical signs most have read about. We hope that with these stories, our children's "voices" will be heard. They are, in essence, the forgotten victims of a disease that's created such controversy. And they need to be heard. We can't do this alone. If you would like to share your child's story with the media, please PM me and I can provide further info. We're focusing first on the print media, so your child's name can be withheld from the article, if you wish. It is their story, NOT their name that's important to the reporter. Again, we're looking for children who presented with BEHAVIORAL/NEUROPSYCH symptoms. Also, if you wish to help us in other ways, we'll gladly accept! If you live in a top 10 state and would like to be the point person and gather media sources for that state, please PM me as well. Thanks for reading. Darlene Great idea. It's true that kids are suffering disproportionately due to doctor ignorance and the variety of symptoms that can be due to lyme. My kids did not have neuro psyche symptoms (except my son was irritable when he was very sick) but I have a relative who I believe has severe neuro psyche problems due to these infections. We are still working on proving it is a TBD for her but later this could be a story. I'd like to read any stories that come out of this! PS - In pre-mommy days, I worked as a reporter. But I'm very new on this Lyme journey, ds4 diagnosed only a few months back. So, I welcome your knowledge, guidance and input in making this awareness campaign a success. Link to comment Share on other sites More sharing options...
cobbiemommy Posted February 22, 2011 Report Share Posted February 22, 2011 I would be happy to help. We are not in a top ten state, but we are in a top state by CDC numbers for Rocky Mountain Spotted Fever. Also, we are a top state for Autism Spectrum Disorder, which my son was misdiagnosed with at age 6. Could other children be misdiagnosed as well????? Link to comment Share on other sites More sharing options...
MichaelTampa Posted February 22, 2011 Report Share Posted February 22, 2011 Sounds like a great idea. I have no kids stories to donate, but wish the project well. Link to comment Share on other sites More sharing options...
matis_mom Posted February 22, 2011 Report Share Posted February 22, 2011 I'm torn about this because we also have a dx of PANDAS, but I would love to help if I can. Same thing here... we also have a PANDAS diagnosis for ds, and for dd we have no positive labs, just going on symptoms, so I don't know how helpful it would be (I'm thinking our story will probably sound more like a crazy mother making up stuff!!! LOL!!!) Now, seriously, I'd be happy to share, at least ds's part, since after over a year of treating PANDAS and before moving to plasmapheresis, we finally got 4 bands positive through LABCORP, and we decided to jump ship and pursue Lyme/Co-infection treatment. Let me know if you have any guidelines to follow, and I'll try to start writing something... Link to comment Share on other sites More sharing options...
adkmom Posted February 22, 2011 Author Report Share Posted February 22, 2011 I'm torn about this because we also have a dx of PANDAS, but I would love to help if I can. Same thing here... we also have a PANDAS diagnosis for ds, and for dd we have no positive labs, just going on symptoms, so I don't know how helpful it would be (I'm thinking our story will probably sound more like a crazy mother making up stuff!!! LOL!!!) Now, seriously, I'd be happy to share, at least ds's part, since after over a year of treating PANDAS and before moving to plasmapheresis, we finally got 4 bands positive through LABCORP, and we decided to jump ship and pursue Lyme/Co-infection treatment. Let me know if you have any guidelines to follow, and I'll try to start writing something... Thanks! What town & state are you in? Link to comment Share on other sites More sharing options...
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