Monday, February 11, 2019

TRIMETHYLAMINURIA


Ok, say that three times fast.  How about once slowly?  Me neither.  It is a mouthful and a rare condition that I did run into years ago. Not me fortunately but one person I worked with had it. 

Trimethylaminuria is a rare disorder in which the body is unable to break down trimethylamine, a chemical compound that has a pungent odor. Trimethylamine has been described as smelling like rotting fish, rotting eggs, garbage, feces, or urine.  The poor souls who have this rare condition do have quite an obvious, unpleasant smell. 

Years ago I worked for a answering service. We had a variety of clients but physicians made up the bulk.

I usually worked the second shift in Sarasota, Fl  but one day my boss sent me to Bradenton to work the first shift for a month.  The towns were relatively close so no real problem. 

When I walked into the office to relieve the night girl, I was assaulted by a really unpleasant odor. It was sour, sweet like rotten garbage or something dead. It was almost stomach churning. 

Of course I blurted, "My God, what is that smell." Surely it wasn't human and had to be a dead fish under the office or a moldering rat caught in the walls. 

The poor girl turned flame red and told me it was her. She then told me it was an inherited condition and there was nothing she could do about it. Bathing, deodorants, perfumes, lotions did nothing. I was stunned. At that time, I don't think there was even the 17 letter name for her condition.  

Then I realized this was probably the only job she could manage as there was minimal human contact. Oddly the odor mostly left when she did. It didn't seem to stick to anything for long.  

We continued to talk quite a bit each morning that I relieved her.  I truly felt for her. She was smart, fairly attractive but wow, the odor, sometimes worse than others. 

She told me what her life had been like so far.  Name calling, bullying, and down right rude comments from strangers--kind of like what I had done.  

She had been put off buses, stayed away from elevators  and asked to leave restaurants. Forget the opposite sex. I have no idea what kind of life she could expect outside of isolation. I have a feeling the family that were recently put off a plane due to body odor, may have had that same condition. 

I don't know where she is today or if she ever got help. There really isn't a lot even to day that helps her condition. When I met her I was in a distressing period in my life. She made me feel blessed and ashamed  of being so obcessed with my petty problems.

Have you met someone like that who is saddled with a horrific condition that just thinking of them makes anything you are going through seem  of no consequence and minor?

45 comments :

  1. Who springs to mind, is an elegant senior lady who was an out patient at a hospital pharmacy I once worked at. She was always stylishly dressed and politely charming. She wore a hat with a veil that covered a cavern where her nose once was. Poor dear!

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    1. Out to Pasture,
      Wow, you really have to admire that lady for facing life and living it regardless. Makes you realize how blessed we are.

      Delete
  2. The poor thing! It must have changed everything for her. How could she have a regular job or school if she smelled so bad? I've never known anyone with something similar. :-(

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    1. Djan,
      After she was put upon in the first grade, her mother home schooled her. Her Mom had the same condition. I have only run into one other and it was a lady in my line at the bank. People were covering their noses. I felt for her and tried to treat her normally.

      Delete
  3. How awful and isolating that would be. I won't whine about celiac anymore.

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    1. Peggy,
      No, you whine all you want. I never understood that disease till you posted about it. Thank you for opening my eyes.

      Delete
  4. That is such a sad story. I can't imagine what life must be like having to deal with something so horribly socially isolating. I'll stop complaining about how much my hip hurts lately.

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    1. robin,
      Aw, go ahead and complain, I do about every health issue. But often I will think of her or someone like her and realize, my conditions have medical remedies, hers did not.

      Delete
  5. That poor girl! I wonder if, with advancements in science, that there hasn't been a cure or at least a lessening of the symptoms.

    My point of reference is a young man I've never met. His mother and I were friends many years ago, and we kept in touch for many years through Christmas cards.

    When her oldest son was 18, playing basketball, he had a aneurysm burst, and was rushed by air ambulance to the hospital. He survived but had a stroke, and at that tender age was unable to walk and had a brain injury. He was determined to do all he could to overcome his disabilities (as much as he could). Less than a year later, he stood and walked the aisle on his graduation day. He still suffers some deficits but is independent. He is, and always will be an example to me, that with resolve and determination there aren't many things I can't get beyond.

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    1. Eileen,
      Some one like that just makes you want to burst with admiration. Bless him and his family for never losing faith.

      Delete
  6. Well now I have to slap myself in my judgy face! I guess we too often assume things from others and add to their pain, modern science probably could find a drug to ease this condition, but if it is so rare there would not be any money in developing it...extra sad.

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    1. Joeh,
      You hailed it. Those are called "orphan conditions" and there is no money in it for pharmaceuticals to spend a fortune researching to cure only a few. Her condition is labeled ultra orphan as it is so rare.

      Delete
  7. I have never heard of this before, that is so sad and what a lonely life she must have. All I have to do is think of some of the children I cared for and their rare conditions to make anything I go through seem minimal. Hugs sweet Patti

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    1. Maggie,
      You have seen it on a very personal level as you took in several children with disabilities. Like I said before, you are my hero.

      Delete
  8. Wow. I didn't know such a thing existed. That does make me feel really sorry for them. However, since I get extremely claustrophobic the longer I am on a plane over about 1-1/2 hours, I can only imagine what extreme effect it would have on me. Dang. Like they say ... until you've walked a mile in my shoes ... poor folks.

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    1. Barbara,
      As much as a feel for people with this condition, it is too much to ask for people to be cooped up with such an odor for the length of a plane trip. I really don't know how they could travel except by car.

      Delete
  9. Oh my. Poor sweet young lady. Maybe someday, God help her.

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    1. Susan,
      I did some checking and there really isn't much help for them today. Just isn't enough money in finding a cure.

      Delete
  10. I have never heard of this. How very sad for its victims and a lesson to not judge others without knowing their stories.

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    1. Olga,
      I know and it is normal when you detect a bad odor coming from someone to first think hygiene. Those 17 letter diseases just aren't common knowledge.

      Delete
  11. I've heard of it but never knew anyone with it or have heard a first hand description of its strength. Very sad for those how have it. I'm sure it's rarity makes it not profitable enough for anyone to put research money into.

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    1. Jean,
      You are exactly right. There is no profit in obscure diseases.

      Delete
  12. My daughter has MS so I know what she goes through all the time and sadly, her mother-in-law has a rare disease that has taken away her ability to move and she lays in a bed all day. I think about people who have things so much worse than me every day and feel ashamed whenever I think I have it tough.

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    1. Snickelfritz,
      I am so sorry about your daughter. MS is really tough. A good friend and a cousin both had it. What her mother-in-law has sounds awful. Those rare diseases just don't get any attention.

      Delete
  13. What a terrible, life altering, life limiting condition. I was unaware of such a condition.

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    1. Linda,
      It is likely that you will never meet anyone with that condition, it is that rare.

      Delete
  14. I have met someone with an awful condition, "ichthyosis" I'm not sure of the spelling, it's a condition of the skin making it law raw and burned. She was a very lovely person and as we talked I remembered reading about her in the papers when she was born.

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    1. River,
      You spelled it right. I looked that up and it really disfigures the skin and sounds purely miserable. Sometimes you just have to ask "Why?"

      Delete
  15. Dear Patti, back in the late 1980s, I volunteered at a St. Paul hospital each Tuesday to chat with young men who were HIV Positive or had full-blown AIDS. At the time, AIDS was like biblical leprosy. Many thought those men were "unclean." When full-blown AIDS developed, the sufferers often had physical symptoms on their faces that repelled some people. To live, knowing that death is imminent and at the same time to know that many find you abhorrent was one of the worse aspects of this disease. It was, as you would know, heart-rending. Peace.

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    1. Dee,
      I do remember how terribly they were treated in the beginning and how everyone was afraid to touch them. Like you said, the way they were treated was almost worse than the disease. Things have come a long way thank goodness. That was so special of you to treat them as normal persons.

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  16. Dear Patti, when I said, "as you would know," what I meant was that your heart is so tender that you would readily understand what these men were feeling. You have so much empathy. It's in almost all your postings. Peace.

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    1. Dee,
      Thank you. I got the meaning and thank you for thinking that of me. Sometimes the cruelties of the world are hard to bear.

      Delete
  17. Oh, how terrible for this woman! I guess I was shown how much we are blessed when we were at cancer center getting Bob's treatment. So many sick people - the children especially squeezed our hearts. Little people enduring so much pain and suffering - you wished you could lift their burdens for awhile.

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    1. Barb,
      Oh I know what you mean. Just show me a child suffering and I am destroyed and know just what you mean about wanting to lift their burdens.

      Delete
  18. Wow! I’d never heard of that med issue. Bet you’re right that the deplaned family, or someone in it, had a med problem. In my work I’ve encountered a multitude of people with various med issues that made me grateful I didn’t have those problems, but also how quickly and easily my status could change with the development of some med event. I often admired how some coped and wondered if I could do even half as well.

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    1. Joared,
      Me too. When I met that girl, I was amazed at what she had accomplished and am not sure I wouldn't be in a corner somewhere very bitter.

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  19. I can't begin to imagine what that poor girl has to go through on a daily basis.

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    1. Fun60,
      Everything we do with ease, she would have been met with judgmental and critical looks.

      Delete
  20. Wow! This story helps put into perspective my issues in life. What an isolating problem she had.

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    1. islandwonder,
      Sue, what a delight seeing your comment here. You have been missed. I just figured you had gotten burned out blogging. Hope this means you are back.

      Delete
  21. I'd never heard of that one. I so hope she found help.

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    1. Mage,
      I did check and as far as I can tell, there have been no treatments for this problem. There are a few herbals they are trying but it looks like nothing so far really helps.

      Delete
  22. I never heard of this and now I can't help but wonder what do these people do? There are many conditions that are so visible and we know to not stare or judge. Something like this is so different, so difficult though.

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  23. Oh, that poor soul. I work two days a week at our Free Care Clinic and, although we have nothing like you've described, we have so many who are barely surviving … and guess what? THEY are the ones that are smiling and thankful for the little bit we can do for them. Yes, it is humbling to say the least.

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