Both of my mom's parents had als and my mom died of it also. I just found out my uncle is dying of it. If you are a carrier of this type of ALS you will eventually die from it. I'm only 22, do you think I should get tested (for genetic reasons ie: children, choice of spouse)?
2007-05-09 19:47:42 · 7 answers · asked by Anonymous in Health ➔ Diseases & Conditions ➔ Other - Diseases
This is not a contageous desease, it's like cancer in that sense.
2007-05-09 20:05:02 · update #1
This is from the FAQ section of the ALS Association Web Site which answers your question precisely:
Q. If I have a family history of FALS, should I have a genetic test even if I don't have symptoms?
A. This situation is called presymptomatic testing. The decision to have presymptomatic genetic testing is highly personalized and often individuals in the same family will disagree whether to pursue it. However, in order for the test to be meaningful, a genetic change in the SOD1 gene needs to first be found in a family member affected with ALS. When an SOD1 change is not identified in a symptomatic person, presymptomatic genetic testing is not available for other family members, because the ALS is being caused by an unidentified gene, thus we cannot test for it.
Benefits of presymptomatic genetic testing in ALS is limited by the absence of preventative treatment, the inability to predict the age at which someone who is a gene carrier will get ALS, or even that a gene carrier will definitely get ALS. Since both a negative or positive presymptomatic test result in a known SOD1 family can have a great emotional impact, genetic and psychological counseling is usually required before undergoing such testing (A presymptomatic genetic testing protocol is typically followed). Individuals often consider how the information that they did or did not inherit the predisposing gene would affect their lives, who they would tell about the results, and how relationships may change depending on the results.
Individuals who learn they do not carry the SOD1 change often feel great relief, although they can sometimes wonder why they escaped while another family member did not. They may regret past decisions made based on the presumed at risk status, or find it hard to let go of that part of their identity. Learning that one does carry a predisposing gene, is usually more difficult and that person may need ongoing professional support. Ambiguity is not entirely erased as the question may change from do I carry the gene to when or will I get symptoms? Commitment to friends and family may be strengthened. However, knowledge of the testing by insurance companies or employers is a concern regarding future coverage. A genetic counselor can further discuss the issues involved in presymptomatic testing.
2007-05-09 23:50:08 · answer #1 · answered by Gopher 2 · 0⤊ 0⤋
If you are in the US, being your age, I would wait. if you have a diagnosis this could exclude you from many insurances unless you get into a group plan without a pre-existing condition clause. You also would not be eligible for life insurance. I did read yesterday, I believe in the New England Journal of Medicine, that they believe to have isolated the gene for this disease. Gene therapy is in it's infancy, but having a son your age and an inheritable disease, myself. this is my opinion.
Good luck to you
2007-05-10 01:50:33 · answer #2 · answered by dat93 5 · 1⤊ 0⤋
I don't know what ALS stands for, but as it is a fatal decease and if it is genetic, do check yourself if you are a carrier. Hope for you that you are not. Bless you.
2007-05-09 20:00:23 · answer #3 · answered by Anonymous · 0⤊ 0⤋
confident, get examined, you would be waiting to deal with the end result. Have a chum with you in case you're stressful. it quite is suitable to anticipate the extra severe and then circulate from there. i understand you're scared and that i wish I had some magic words to take the priority away, yet you ought to understand. in case you knew then you quite ought to make certain in case you want babies, it ought to alter your life, so discover out. solid luck.
2017-01-09 14:07:27 · answer #4 · answered by anstine 4 · 0⤊ 0⤋
j,you're a brave girl,,i hope you avoid the awful disease,,,,,i,in your place would focus on treatments,,,,and in hooking up with docs who treat the disease,their treatments reflect their thinking and mindset,which drugs are useful,whether foods or petrochemicals are factors.identifying the gene trait would help
2007-05-09 20:12:47 · answer #5 · answered by quackpotwatcher 5 · 0⤊ 0⤋
Yes, you probably should be tested. But the person you SHOULD be asking is your doctor.
Good luck.
2007-05-09 19:58:40 · answer #6 · answered by luvrats 7 · 0⤊ 0⤋
Yes. it is better safe than sorry.
Good Luck!
2007-05-09 20:00:27 · answer #7 · answered by Goobergirl 2 · 0⤊ 0⤋