Starting a network for people with Lymphatic Malformations, their families, friends and medical professionals to come together in a positive way. I would like to help raise money for research of Lymphangiomatosis, Cystic Hygroma and Lymphatic Malformations. One way you may help this cause without it ever costing you a penny is to use Good Search. See the link below and in my friends list. Every time you search the Internet as you normally would through Good Search you raise money for the charity you have selected. Go to Good Search today and choose the charity that will help to support Lymphangiomatosis and Lymphatic Malformations.
< imikimi - Customize Your World
VASCULAR ANOMALY CENTER at BOSTON CHILDREN'S HOSPITAL HAVE SOME OF THE LEADING EXPERTS TREATING LYMPHATIC MALFORMATIONS SUCH AS, CYSTIC HYGROMA. THIS IS A GREAT STARTNG POINT FOR ANYONE SEARCHING FOR THE BEST TREATMENT>
http://www.childrenshospital.org/clinicalservices/Site1964/mainpageS1964P7sublevel26.html
Music
I have a general love and appreciation for all music so my taste is very eclectic. Love the Clark Brother's, Josh Groban and Colby Callait right now.
Cystic Hygroma & Lymphangiomatosis 166 friendships our group has grown a lot in 1 year! I want to thank all of my LM families who have connected and shared this year. You are the best! Posted at 12:49 PM Apr 17 view more
About me: I am 37 years old, married, have 4 children and was born with a Macrocystic Lymphatic Malformation called Cystic Hygroma and Microcystic Lymphatic Malformations called Lymphangiomatosis. The picture to the left in my profile is of my 8 pound Cystic Hygroma in my right axillary. The small dot to the right of my scar is a Lymphangioma tumor. Both tumors are benign tumors of the lymphatic system.
I decided to create a Myspace account because I have yet to meet anyone else with my condition. I also, wanted to increase interest in the medical community, increase awareness and help people with Lymphatic Malformations to network in a positive way. Because these medical conditions are rare many patients go through years of medical testing and misdiagnosis. The road is long and at times frustrating. The liturature out there is limited and some of it is alarming. I know there are many expecting parents who have received a Cystic Hygroma diagnosis. Those parents are often frightened and sometimes faced with a difficult decision regarding their pregnacy. I hope this will help those parents and others effected by these conditions.
I am going to blog about my condition and my experiences along the path of my medical treatment. If you share any of the same experiences please let us know in the comments. If you are aware of programs, support groups and organizations helping those with Lymphatic Malformations please feel free to share that information here. Please feel free to share your story or experience in the comment section or send a private message. You may just meet another person with a similar story and make a connection with someone who can relate. I hope everyone will be respectful and considerate in their interactions on this space. There are a few people out there who may not have that consideration and for that reason I have settings to help prevent disrespect to our group and spam.
Thank you for joining and enjoy!
Please join our group and share your story!
http://groups.myspace.com/lmnetwork
Press on Bleomyacin Schlerotherapy in the UK. I have identified pro's and con's of this and other schlerotherapy treatments in my blog. For more information you might want to start in my archives and look for the blog on schlerotherapy.
Thank you for sharing with us how having hope can lead you to experiencing your own miracle. There is a LOT of LIFE with Lymphatic Malformations/Cystic Hygroma. Your beautiful daughter is living proof of that.
This is an old from a previous year. Including this because of the nice kudo's to Boston and to let you know about ORLive. I have discussed a future ORLive segment devoted to Lymphatic Malformations. Boston is considering this. I will let you know as soon I get word. Check out ORLive at http://www.or-live.com/childrenshospitalboston/1740/
Who I'd like to meet: Other's with Lymphatic Malformations, their family, friends and medical professionals with an interest. Anyone with Cystic Hygroma, Lymphangioma's or Lymphangiomatosis.
Lymphatic Malformation Patients
VIDEO:Histopathology Neck--Lymphangioma (cystic hygroma)
Thanks CJay:) I've contacted the Lymphatic Research Foundation about the clippies and I'm waiting for a response. Ideally, I would like the sales to go straight through the foundation. I'll keep you updated:)
The picture of the clippies below are a fundraising effort from one of our group members. She's offering them for a donation to the Lymphatic Research Foundation, I believe. If you are interested send me a note and I will forward it to her or you may click her picture next to the photo of the clippies and contact her yourself.
I do know the answer to that questions. For most people Cystic Hygroma/Lymphatic Malformation is a spontaneous mutation. Meaning for whatever reason this condition presented itself in your child. There was probably no history of this condition in your family and chances are there won't be any in the future. In cases of spontaneous mutation, my understanding is, this is not a hereditary condition. This means you are at no greater risk then the rest of the population to have another child with this condition. I have also, read your risk only increases by 1% over the rest of the population. Now, if your child has a genetic birth defect that brought the CH/LM on then, depending on the condition, there could be a chance of passing this on. For children with CH who do have a genetic condition many times the girls have Turner's Syndrome. This is a condition that only touches girls and that they can live very typical lives with. One of the big things with Turner's Syndrome is that the girls are infertil. Because of their infertility this condition cannot be passed on. Down Syndrome, Noonan's Syndrome and Edwards Syndrome are the other conditions that have been associated with CH/LM. Some of these are hereditary and some are not. It would be a good idea for you to consult with a genetisist to determine if there is a need to perform genetic testing so that you may best prepare for future family planning. I hope this information answers your questions and helps give you some peace. I was never afraid to pass on CH to my kids because I do not have a genetic birth defect only CH/LM. My 4 kids are CH/LM free. Please look at my blog archives for more specific information and links to additional resources on this topic.
hey there! sorry its been so long since i've written, been busy baby will be 10 months on friday and moves everywhere! i have a question that i cant seem to find an answer to and i think you might be able to help me. my husband and i would like to try in a year or so to try and have a nother child, but im worried about having another baby with CH. we managed to beat the odds and Aili's resolved, but i cnat be sure that we would be that lucky again. any info? thank you. you'r alwys in my thoughts, hope all is well with you and your family. lots of love
Finally! I have found people who know what I am going through, let me give a little background. I am 19 weeks pregnant with my 2nd baby, at 12 weeks docs found a cystic hygroma and told me all the bad news, and gave me the option to abort. We said no way! The chromosomes later all came back normal. At 16 weeks cystic hygroma was still there but doctors seemed more hopeful. We are praying for the best. This pregnancy has been so scary for me and NO ONE has ever heard of this to help me cope. I am praying for my baby to survive! We go back in a week for another ultrasound. Please pray for us.
Thanks for the add!! I'm so releived to find people who actually know what cystic hygroma is!!! My whole life everyone always looks at me like im speaking a foriegn language when I tell them about my birth defect. So this is great!!
thanks, this has been great I have gotten lots of information from your site , this is deff a blessing, my son has been dealing with this now for 2years with not to much help from anyone or any support system..He was born with noonans syndrome and LM, started when he turned 12... it has been a rollercoaster ride to say the least.. I again thank you.....
I just wanted to stop by and say thank you for your comment. It really does give me hope to know that there are normal people out there living every day lives with this condition.
I just wanted to stop by and THANK YOU from the bottom of my heart for posting the bulletin about our baby and the posting on your page! We looked at it and our hearts melted with joy! I have got many responses from your postings already :) You are truely a blessing to me.
Hey wanted to give you a update. Got my stiches out yesterday. I feel weird without them. My neck is still numb and has no feeling in it. My lip still hangs when I smile, talk or eat. Doctor said hopefully the nerve will heal in few weeks to month. She said I dont need therapy which is weird but I'm going to do my own therapy. She said to come back in 6 months. Looks like I have several more surgeries down the road. Takin one step at a time and living life to the fulliest. Have to be strong and dont think or care about what others think of me. Put my head up high and be strong! Thats my motto everyday.
Hi. Wanted to give you a update how I'm doing after surgery. Everything went well they removed three or four cystis from my left side of my neck below my ear and neck. They started where my old scars were and went over. The cut doesnt look bad and looks like it will heal easy. I have some nerve damage in the face. Hoping its temporary. They said when they were digging the roots that they hit some facial nerves. My face looks like I had a stroke mostly in the lips and can't chew on left side. So might have to do some physical therpy for that. Same thing happen to me when I was little but wanted to tell everyone I'm doing good and healing fine. Thanks for all the support and prayers!!!!!
