NEW - Get Expert Explanations from Nephr... - C3 Glomerulopathy

C3 Glomerulopathy

NEW - Get Expert Explanations from Nephrologists Specializing in C3G

DavidF_NKF profile image
DavidF_NKFPartner
4 Replies

Expert Explanations on C3G

Purpose of C3G Expert Explanations Feature

• This is a forum for patients and care-partners to learn about specific topics on C3G.

• A team of 5 nephrologists who are expert in C3G will provide explanations to patients on topics such as causes of symptoms, how certain treatments work, what do lab tests tell the health care team, and so forth.

- Dr. Andrew Bomback, Columbia University College of Physicians and Surgeons, New York, New York

- Dr. Christoph Licht, The Hospital for Sick Children, Toronto, ON, Canada

- Dr. Carla Nester, University of Iowa, Iowa City, Iowa

- Dr. Richard Smith, University of Iowa, Iowa City, Iowa

- Dr. Joshua Thurman, University of Colorado Anschutz Medical Center, Aurora, CO.

THIS IS NOT A FORUM TO RECEIVE MEDICAL ADVICE. Only your personal physician can give such guidance.

GUIDELINES FOR PATIENT QUESTIONS

When submitting your questions, by complying with the following guidelines, you will enable us to provide informative answers in a timely way.

• Submit one question per submission

• Questions need to be:

- Related to C3G

- Clearly and concisely phrased. Provide enough information so we don’t have to guess what your point is, but not so much information that the question is hidden. It may help to pose the question in more than one way.

• We cannot entertain questions that ask for medical advice for your or your care-partner’s situation, or answer questions of a medical emergency nature. Rather, Experts will provide medical explanations, as far as possible.

• It will not be possible to request an answer from a specific Expert.

• We will try to answer your question as quickly as possible, but there may be times when answers will be delayed. For those situations, thank you for your patience.

HERE'S HOW IT WILL WORK

• We have created a topic on the C3G Online Community entitled “Expert Explanations”.

• Patient or care-partner submits question as a post on this community under the “Expert Explanations" topic (you'll see the "add topic" button under the text box when writing a post).

- IMPORTANT: Add “Expert Opinion” to the title of your post so we can easily identify it for sending to the Experts.

• NKF forwards question to Experts.

• A consensus answer is assembled by the five C3G Experts (this provides the most robust answer possible).

• The question and consensus answer are posted under the “Expert Explanations" topic so everyone can see them.

• Don’t forget, we are not a Facebook site; you can use any username you want, so you can ask questions anonymously.

• As we gain experience with this feature, we may make changes to the process.

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DavidF_NKF
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4 Replies
MPGN-C3G profile image
MPGN-C3G

Dear David,

I am not sure that I am writing my concern in the right place, but I cannot find where I should putmy question... My son is 7 and has a biopsy proven DDD: C3 is extremely low, C3Nef is positive, sC5b-9 is extremely high. The gene test has shown a homozygote deletion of the genes CFHR1 and CFHR3. I do not quite understand if this genetic modification is the reason of his DDD or if it is C3Nef. I have heard that if C3Nef is the reason, then there is a hope that it is away after some years and my son can get healthy again. But if the reason is of genetic nature, then there is no hope. Does this gene deletion play a role in my son's disease? Have there been cases of getting healthy after DDD? What is the life expectation with DDD? Thank you so much in advance!

tofflenutmeg profile image
tofflenutmeg in reply toMPGN-C3G

Hello,

I have no expert answers at all, but we have been finding out about C3G since our son's diagnosis three years ago. The statistics can seem worrying to begin with, so I want to say please don't panic if this is all new to you. We are also very hopeful about current research into medicines in this area - there seems to be a lot of work in this area. I'm sure someone with expertise will answer more helpfully but wanted to respond to your message!

: )

MPGN-C3G profile image
MPGN-C3G in reply totofflenutmeg

Thank you for the encouraging words. I hope so much that my son can wait for so long until there is a drug against DDD on the market. And I hope we can afford this drug then.

tofflenutmeg profile image
tofflenutmeg in reply toMPGN-C3G

I'm hoping so too. Wishing all strength to you and your son.

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