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UPDATE; daughter with bumps on knee

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UPDATE; daughter with bumps on knee

Posted by K on September 24, 2002 at 00:36:58:

I took my daughter in for the small bb shaped bumps on her knee. She as well as my other 4 children have been diagnosed with ehrlos danlos syndrome. After this diagnosis, so very much has come to light. the bumps are only those from this syndrome. We are not going to biopsy them at this time, as genetic and cardiac workups are being scheduled post haste....she will have them monitored, and should they grow to 8mm or calcify and become painful restricting the movement of her knee... we will remove all if possible. What do we do now... is there any vitamin,mineral, supplements that will help my children???? Please let me know. This is the cause of their IBD??? and many other painful situations they have endured for so long. I know someone out there can help me. Please....



Re: UPDATE; daughter with bumps on knee

Posted by
Cheezi on September 24, 2002 at 01:15:50:

In Reply to: UPDATE; daughter with bumps on knee posted by K on September 24, 2002 at 00:36:58:

K, did your doctor use the term, Marfan's Syndrome? I believe this is the same as Ehrlos Danlos Syndrome. This site might help shed some light on it for you. http://www.marfan.org/pub/factsheet.html

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Re: UPDATE; daughter with bumps on knee

Posted by alexa on September 24, 2002 at 08:57:09:

In Reply to: UPDATE; daughter with bumps on knee posted by K on September 24, 2002 at 00:36:58:

This is a genetic disorder in which one of the parents has to carry the gene but may not have the syndrome. It comes in four varying types: one is in the skin/the least serious, one is in the vascular system-the most serious, I am not sure the exact types of the other two. Rarely, and only rarely, it shows up in a gene mutation where the parents don't carry the gene. It is a very rare disease and more information can be found by simply looking it up on this rare diseases website. (www.ednf.org) It is spelled Ehlers Danlos Syndrome. It is a disease of the connective tissue (faulty collagen in particular). A friend of mine at work has a daughter with the vascular type. Since it can be such a serious disease, it would be wise to read all that you can on it. Also, ask people on the bulletin board what natural remedies will help this (I am not sure about that-although stress reduction would be essential for the vascular type). My heart goes out to you, I wish your family the best. The lady at work told me there is only one conventional doctor in the states who specializes in treating this but he didn't seem to do much for her daughter except put her on blood pressure medication to prevent her veins from having problems. She got her contacts at Vanderbilt University Hospital in Nashville.

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Re: UPDATE; daughter with bumps on knee

Posted by alexa on September 24, 2002 at 09:00:06:

In Reply to: UPDATE; daughter with bumps on knee posted by K on September 24, 2002 at 00:36:58:

I was wrong, there are six types. Please check out that website I gave you.

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Re: UPDATE; daughter with bumps on knee (Archive in wellness.)

Posted by Walt Stoll on September 25, 2002 at 06:48:51:

In Reply to: UPDATE; daughter with bumps on knee posted by K on September 24, 2002 at 00:36:58:

Hi, K.

Until we know how to alter the genetic structure of problems like this (probably 50 years from now) we have to trust Mother Nature to help us get the most out of the genetic structure we have inherited.

That means serious wellness: see the glossary and the archives about this and let us know how your daughters are in about a year. You can get a free protocol on the home page article under "How to be healthy."

Walt

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