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My nephew was recently diagnosed with ECD and is receiving treatment at Mayo in Rochester, MN. Does anyone know of a better place?
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Erdheim Chester Disease
- By KarenCox
- Posted March 27, 2008 at 5:20 pm · 9 replies
- In Finding a doctor
- Shared with the public
9 replies
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- By YankeesFan
- Posted March 28, 2008 at 9:05 am
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My husband has ECD. I do not know of a better place than the Mayo Clinic. I know they are familiar with histiocytosis and have treated many patients there. That in itself is amazing. There are not many doctors who are familiar with the disease. Have you tried contacting the Histiocytosis Association of America for recommendations? www.histio.org Best of luck to your nephew. You are in our prayers.
- By garyskat
- Posted March 28, 2008 at 10:25 am
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I agree with YankeesFan about Mayo Clinic being one of the best hospitals and about contacting the HAA.
You, your nephew, and entire family will be in my thoughts and prayers.
- By walter_comer
- Posted March 31, 2008 at 4:27 pm
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MD Anderson in Houston does have Dr. Kurzrock who is pretty much the expert on ECD. She's seen more cases. They are the ones that began treatment w/ Interferon.
The # is (713) 792-3245, and you'll go through Christie Carver-Fryer.
I've been there. They are expensive. But, they will work with your insurance to get "In-Network" rates, and they are very helpful.
- By Jiggs
- Posted June 6, 2008 at 11:26 am
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Hi,
I have ECD. Diagnosed in 1986, I have struggled for 22 years. The Mayo Clinic offered little to me in 1993 however, things have changed. Dr.R. Kurzrock from Texas has treated ECD successfully. I am now being treated with injections of interferon. Write to me if I can help.
The Mayo Clinic is likely aware of Dr.Kurzrock but her expertise is #1 with me.
- By topspin
- Posted June 30, 2008 at 4:37 pm
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How long have you been in treatment with the interferon. Is it helping. ?
- By topspin
- Posted June 30, 2008 at 4:57 pm
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How long have you been in treatment with the interferon. Is it helping. ?
- By jsox
- Posted September 24, 2008 at 9:36 am
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Would you mind telling me how you have made it so long with such a terrible disease? There must be a treatment out there that is working, right? My husband was just diagnosed and everything I read makes it sound like he is going to die any day soon. He doesn't have any symptoms except some bone pain, growths in his eyes, occasional charley-horses in his legs and a rash. He's pretty healthy. I'm desperate for some hope. Please reply. Thank you & God bless.
- By Roja
- Posted November 5, 2008 at 12:53 pm
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I am awaiting a definitive diagnosis, but the hemotologist, et al, believe what I have is ECD. It is very frightening, but they say I may have had it for 10 years already. My symptoms started with Diabetes Insipidus 10 years ago and 8 years ago I began having severe kidney pain-my kidneys are really enlarged but working fine (so it's been an 8 year process to get to this diagnosis). I'm thinking they'll start me on interferon-alpha; does anyone know what the side effects might be...? I feel perfectly fine, so it's wierd knowing that I have an incurable disease. I'm more afraid of the treatment than the disease at this point.
- By garyskat
- Posted November 6, 2008 at 10:10 am
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I am so sorry you are dealing with your health issues and now having to wait for a final diagnosis. You are in my thoughts during this difficult time.
There is a group of patients and loved ones who have joined together and built a website, www.erdheim-chester.org. We invite you to take a look at it. We hold regular chat sessions with each other to allow an easy exchange of information about the disease and personal experiences. (Many are on interferon and there is usually discussion on the subject.)
Wishing you all the best. Please contact me directly if I can provide any help to you.
GarysKat
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