Letter: Medical test result comes too late


I seek opinions because I want to learn something. 25 years ago, a family illness brought about years of medical study by me because it caused a very avoidable death.

At the time, my children were 8, 9 and 11. I discovered a likelihood of an extremely serious genetic disorder.

Three years later, another illness nearly killed my wife. Again, that illness fit my suspicion. Over the years, I begged and begged all physicians to rule out my suspicion because many in my family had symptoms and lab readings supporting my suspicion. I was ignored and testing was denied by all.

Recently, with several members of my family, readings appeared in testing that made me plead for testing to rule out my suspicion and, again, all physicians denied my requests.

In the last few weeks, my wife came as close to dying a second time as a person could get. Finally, physicians honored one request I made to test for something very specific to the disorder I have suspected all these many years.

It revealed a serious problem correctable by medicine and she was saved. Other testing revealed another glandular tumor that must be dealt with, like she had before and that can only appear in people with the rare disease I have suspected all these many years.

Now we all know a very rare genetic disease, which only affects 500 to 1,000 families world-wide, has been troubling my family all these many years.

This illness is such a serious threat to the quality of life, my children should have been counseled to never have children, had the testing I requested revealed its genetic presence.

I now have six beautiful and very loved grandchildren and as many as half of them could live a miserable life, battling the impacts of a horrendous disease that makes all kinds of tumors in glands affecting their physiologic and psychiatric well being, a disease that causes very youthful deaths without extreme medical intervention.

Who is responsible for all of this?

Is it insurance companies, the attitude of the medical community or should I have bought a gun, pointed it at someone’s head and said, “Test or you die?”

I begged and begged and even wrote medical licensing boards. I pointed out evidence and no one would do a thing and now, I am miserable thinking about the years of agony my kids and grandchildren will suffer and all the past suffering so far that all have had that could have been avoided.

Where did I go wrong?

Carl Sundberg

Sweet Home