A Rare Disease TMAU

Anya
Posted October 26, 2020 from Philippines

Trimethylaminuria or TMAU, formerly called Fish Odor Syndrome, is a metabolic disorder where the body lacks enough enzyme to break down trimethylamine.

I don't know where or how to start, I can't even remember the first day that I noticed those weird reaction of the people around me.

But one thing that I am sure about and that is the awful feeling that is consuming you every day. Because we live in the same hell i know exactly how it feels like to be isolated to others, to be rejected, being ashamed in front of your crush or by not getting any support from your immediate family members especially your parents who are somehow pretending that they don't smell shit on you despite of your everyday struggle at school or at work.

I think I initially noticed my symptoms months after I finished high school so that's the reason why I only finished one year in college because it scarred me so badly I’m afraid now to go out of my room. Ever since the pandemic started I felt it getting worse drove me to my insanity really then the neighbors started complaining then the whole community I wanted to tell everyone that I didn’t ask for this to happen I tried everything I can but it felt getting worse and now they still kept bullying me till now and all of my future dreams of becoming a lawyer has crumbled because of it but you know what I realize that apparently there are a lot of people like me out there who might not now they have it and I wanted to use my voice to tell them that they are not alone and raise awareness towards this disease and that everyone should understand that and remember that we also have feelings and never asked for this disease  .

This story was submitted in response to Share On Any Topic.

Comments 9

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Hello, Anya,

Welcome to World Pulse! I'm happy that a new voice from the Philippines is rising.

You are so brave to share this condition we have. This is my first time to know about this so your post educated me with something new today. Our society has been harsh to people. You are strong to endure all of these. We all need a community to belong to, a community to support us. That is why World Pulse is here. You are safe to share your stories here because this is a community of encouragers.

We see you. We hear you. We value you. Your condition doesn't make you less of a woman. You are worthy of love and belonging. We will walk alongside you. Thank you for speaking up! Yes, I believe that is your mission in life because there are others like you who are still voiceless but are in need of help and support.

I hope there will be ways to manage this condition, if not cure it. I encourage you to read stories here and find inspiration from women's stories. Welcome again to our growing sisterhood!

Anya
Oct 27
Oct 27

Thank you it took me a lot of courage to speak up about TMAU because a lot of people out there might be suffering from this disease and they are not aware of it I want them to know that they are not alone.

Nini Mappo
Oct 27
Oct 27

Hello Anya,
Welcome to World Pulse. I'm so sorry to hear of your invisible illness that has stopped you from living, and that your family has offered no support. It must be such a dark isolating place to even be abandoned by your family. Good on you for finding the courage to share your story to encourage others and embrace them as you'd have wanted for yourself. That is so lovely of you.
Here at World Pulse, we embrace you Anya,
Love and hugs and sparkles.

Busayo Obisakin
Oct 27
Oct 27

Hello Anya
I want to join my other Sisters to highly welcome you to World Pulse, the community of exciting women in 190 countries of the world. We hear you Anya, we see you, we feel you, we value you and we respect you. You are worthy of our Love, support and adorable part of our growing sisterhood! Welcome once again!!
Love
Busayo

Tamarack Verrall
Oct 27
Oct 27

Dear Anya,
You have been through so much, and are turning your own experiences around to make sure others do not experience the isolation that you have. I see from your profile that you are fundraising to create this support, and that sharing on social media will help both educate and hopefully find the support you need. Can we link this story on Social media as a help to you?
I wish you big success.
In sisterhood,
Tam

Anya
Oct 27
Oct 27

Hi thank you so much madam and yes please this is a huge step for me in a journey of healing through this disease and I would very much need all the help I can get in order to make a change and help others! Thank you this means so much to me! I never thought anyone would care thank you

Beth Lacey
Nov 18
Nov 18

I am so sorry for you. I hope some day you can get help for it

Urmila Chanam
yesterday
yesterday

Dearest Anya,
Everything in life, atleast most of the things, can be managed if not solved entirely. Fish Odor Syndrome is not causing you or anyone around you any 'real' harm so that is a positive thing to keep you moving ahead without letting it drag you down. There are some medicines that can be taken, some kinds of soap, talc and lotion which can help in reducing the condition. And after making these little efforts, leave the rest to others to manage their response because you cannot take the responsibility of everyone else. Be bold.
Prayers and hugs,
Urmila Chanam