Does this ever happen to you?

  1. I just checked my e-mail, and there is a message asking me if I know about any new treatments for an extremely rare chromose deletion condition. Uh, I had never even heard of it until I looked it up and discovered that it has been identified in fewer than 5000 patients in the world. Gee, I must have missed class the day they covered it. I understand that when you're facing a scary diagnosis, particularly if it is your child's, you leave no stone unturned in searching for information. It isn't bothersome to be asked these kinds of questions, but I sometimes feel like I'm letting people down when I let them in on my ''secret''- I'm no Albert Schweitzer, and he didn't know everything, either.
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  2. 8 Comments

  3. by   jo272wv
    Part of becomming a nurse sets us up for these types of questions from family and freinds. When I am asked any question the first thing I ask them is what the Dr. said. If they have not seen the Dr. I encourage them to do so. If they have and just asking for information then I will do some research and get materials for them and encourage them to take the literature with them to the next Dr. appointment and discuss it further with the doc.

    I never dx or go against their Drs. advise I simply stick to education and support.
  4. by   htrn
    Try the National Organization of Rare Disorders (NORD) at www.rarediseases.org . I have a daughter with a rare chromosomal abnormality and I know how hard it was to not have alot of information - and having to explain to every medical professional what exactly was wrong with her. NORD can really help and put her in touch with any support groups that are available for that particular disorder.

    Tell her from one mom to another, "Good Luck, chin up" and I'll say special prayers for her and her child.
  5. by   mamason
    First of all, let me just say that I'm not that computer savy. I don't understand how a stranger could get your email and ask you a medical question like that. Is someone giving out you email address? I've seen other threads that talked about unwanted email pertaining to the medical field. I've never gotten anything like this. It just surprises me.
  6. by   Nemhain
    Does this ever happen to me? Yes, but not via email.

    For some reason, I swear, people think that I have intimate knowledge of genetics and conducted stemcell research with the questions they ask me and whatever I happen to say (which I do preface with "I'm not quite sure about this...") they take it as the gospel. Now, when I tell people that increasing their fiber can help lower cholesterol or that too much salt in the diet will adversly affect bloop pressure, they look at me like I'm from the outer reaches of space. Somedays I just go nuts.
  7. by   mercyteapot
    Quote from mamason
    First of all, let me just say that I'm not that computer savy. I don't understand how a stranger could get your email and ask you a medical question like that. Is someone giving out you email address? I've seen other threads that talked about unwanted email pertaining to the medical field. I've never gotten anything like this. It just surprises me.
    The email wasn't from a stranger, it was from my cousin, who is a 3rd grade teacher.
  8. by   JohnBearPA
    Quote from jo272wv
    Part of becomming a nurse sets us up for these types of questions from family and freinds. When I am asked any question the first thing I ask them is what the Dr. said. If they have not seen the Dr. I encourage them to do so. If they have and just asking for information then I will do some research and get materials for them and encourage them to take the literature with them to the next Dr. appointment and discuss it further with the doc.

    I never dx or go against their Drs. advise I simply stick to education and support.
    :yeahthat: :yeahthat: :yeahthat: :yeahthat: :yeahthat:
  9. by   mercyteapot
    First, let me apologize for being unclear. I edited the first version of my message, because in reading it over it sounded too ''wordy'' to me, but I guess I eliminated some important information.

    This is the situation: My cousin, who teaches 3rd grade, sent me this email asking about the condition mentioned. It has been dxed in the infant sibling of a child in her class. As many elementary school teachers do, I imagine my cousin has encouraged parents to let her know if there are any significant changes in student's home or family life. My cousin just wandered what ''else'' I knew, over and beyond the bit she knows. As it happens, all I know is what I've learned from the internet. My cousin said that the baby has a whole team of specialists and I'm sure a geneticist is involved. Thank you for the suggestion about NORD.
    Last edit by mercyteapot on Oct 29, '06
  10. by   Jennifer, RN
    Too wordy? Have you read some of the posts on this site?

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