Pheochromocytoma is a catecholamine-secreting tumor that arises from chromaffin cells of the sympathetic nervous system. The term paraganglioma refers to any extra-adrenal or nonfunctional tumor of the paraganglion system, whereas functional tumors are referred to as extra-adrenal pheochromocytomas.
Hi sarahp, I have the gene and have had the disease too, and two of my kids have the gene. You are in good hands at the NIH with Dr Pacak's team.
hello PeMa and wendie! are you still a part of this chat? i am newly diagnosed with SDHB . looking for others, being treated at NIH now after a radical nephrectomy about 8 mos ago. would love to talk to anyone else with this rare genetic thing!
I have this gene. My daughter, niece and brother all have the gene. I am the only one with the disease.
Yes frequent scans and testing is needed for SDHB. It has the potential to be an aggressive mutation, so it's better to be safe than sorry. The Troopers recently put out a newsletter that highlights SDHB. (If you haven't had a chance to look at it, you can find it here http://www.pheoparatroopers.org/newsletters/July%202011%20Newsletter.pdf) Take care and keep in touch!
Thanks Foxy. We are SDHB positive (I'm never sure how to say that, I guess we just have the SDHB mutation) and I've had a carotid mass a few years ago, so we're very conscious of the need for frequent screening. The NIH guys (Karen Adams and Dr Pacak's team) obviously have access to the newest tests and therapies but most of all they are really keen and they see lots of patients with this mutation. In the UK the screening recommendation at the moment is not as frequent which can make a huge difference. Thank you, NIH. It's early days but hopefully we can spread best practice around the world.
Wonderful to hear from you! I'm so sorry that you and your family have to go through this, but glad to hear the you are getting the best care you can get. I've never been to the NIH, but I have heard only good from them. (I have many contacts within the NIH and the doctors there respond to emails faster than all the other hospitals that I communicate with.)
Hi elizabeth3300 I'm not sure if anyone on here is an expert but I for one will share what I know if you like. Have you been diagnosed with the SDHB mutation? What would you like to discuss? :-) Fire away! Mario
Hi everyone, I'm a new pheo patient. Would like to discuss this disease with anyone with info. This seems to run in my family and I'm just now finding this out. I've been all over the net looking for information. I found this site through the National Institute for Health.
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