Unusual Medical Disorders

BDDToday’s episode, “Trapped Inside Your House” featured women who were physically and emotionally trapped inside their own homes due to unusual medical disorders. Learn more about their disorders and websites that offer help below.

Obesity is not a simple condition of eating too much. It is now recognized that obesity is a serious, chronic disease. No human condition — not race, religion, gender or ethnicity — compares to obesity in prevalence and prejudice, mortality and morbidity, sickness and stigma.
www.obesity.org

Trimethyaminuria, also known as Fish Odor Syndrome, Fish Malodor Syndrome and Stale Fish Syndrome, is a metabolic disorder in which an individual is not able to break down trimethylamine, the compound that gives fish their fishy odor, into smaller compounds. Consequently, trimethylamine accumulates in the body and is then released in the person's sweat, urine and breath, giving off a strong fishy odor.
www.genome.gov

If you think you suffer from Trimethyaminuria, the Human BioMolecular Research Institute offers testing for this disorder.
www.hbri.org

Body Dysmorphic Disorder (BDD) is a severe condition that involves a preoccupation with a perceived defect in appearance. Individuals with BDD experience excessive shame, anxiety, and often depression about their appearance. BDD suffers often seek dermatologic or cosmetic surgical procedures and frequently use or avoid mirrors. Much of their self-worth is related to how they feel about their appearance.
www.bddclinic.com

If you or anyone you know suffers from any of the conditions mentioned in “Trapped Inside Your House” or another serious issue not discussed, share your story on the blogs.

I HAVE SUFFERED FROM CHRONIC BAD BREATH FOR ABOUT TEN YEARS, IT WAS REALLY BAD BUT THANK GOD I FINALLY FOUND SOMETHING THAT REALLY WORKED AFTER BUYING SO MANY DIFFERENT MOTHWASHES THAT CLAIMED TO BE THE CURE... I WENT TO KMART 2 WEEKS AGO AND FOUND "SMART MOUTH 24HR-FRESH BREATH" I WAS VERY SCEPTICAL BUT DECIDED TO TRY IT AND TO MY SURPRISE IT WORKED!!! IT'S 2 BOTTLES YOU USE 4 PUMPS OF EACH AND RINSE & GARGLE FOR 60SEC. TWICE DAILY AND THAT'S IT! I CAN FINALLY TALK TO PEOPLE AND NOT WORRY THAT I WILL OFFEND THEM WITH MY BAD BREATH!!! THAN YOU SO MUCH TO THE PERSON WHO FINALLY DISCOVERED THE SOLUTION TO SO MANY PEOPLES BAD BREATH PROBLEMS! TRUST ME IF YOU WANT TO LOOSE THAT TASTE IN YOU MOUTH LIKE YOU'VE BEEN SUCKNG ON A SOCK ALL NIGHT, GO OUT AND GET THIS PRODUCT... IF IT WORKED FOR ME IT CAN WORK FOR ANYONE!!! I PROMISSE!!!

Hello Tyra,

How are you?

I have an 18 year old Daughter, who was diagnosed with a rare disease named - Hereditery Angioedema C1 Esterese Inhibitor Deficiency. She had been sick having AWFUL ATTACKS on her body, for about 3-4 years before she FINALLY was properly diagnosed with this rare disease. The Doctor, that diagnosed her, does not know much about the disease himself, he is continually doing research on it. I contacted the CDC, and they were unable to give me information on the disease as well. I am needing to get connected with a SPECIALIST/DOCTOR/ HOSPITAL, that would possibly specialize in treating patients that have this disease. By it being a rare disease, I have not been able to connect with anyone, its not well known at all. I NEED HELP for My Daughter. I also would like to get this information out to others, that possibly have had these same symptoms and also have been misdiagnosed. Her attacks are continuing and we need HELP! I hope to hear back from someone and be able to get the word out....Thank You So Much :-)

Hi Tyra
I really need your help.
I am from Africa, Ethiopia, I am 30 years old. My sex is male.
I have fish & fecal odour. It smells from 3 to 5 meter distance
I have TMAU disorder. I am suffered almost for 8 years. I have that disorder that 28 year old lady O’Lenfia had. I have been frustrated to no end.
Is there any way to get O’Lenfia address like email...etc it may help us to exchange experiences.
I keep myself at home. The sad thing is even my families not accepted me. They don’t like me to join them at home. So I spent my time day & night in my bed room.
If outside world not accepted you, you have an opportunity to keep yourself at home but if both the outside world & your families don’t accept you, what can you do?
I don’t know what to do. Pleas help.

Hi Tyra
I really need your help.
I am from Africa, Ethiopia, I am 30 years old. My sex is male.
I have fish & fecal odour. It smells from 3 to 5 meter distance
I have TMAU disorder. I am suffered almost for 8 years. I have that disorder that 28 year old lady O’Lenfia had. I have been frustrated to no end.
Is there any way to get O’Lenfia address like email...etc it may help us to exchange experiences.
I keep myself at home. The sad thing is even my families not accepted me. They don’t like me to join them at home. So I spent my time day & night in my bed room.
If outside world not accepted you, you have an opportunity to keep yourself at home but if both the outside world & your families don’t accept you, what can you do?
I don’t know what to do. Pleas help.

Tyra,
I just absolutely love your shows! I think you are an inspiration to everyone out there. I really need your help. I found out 6 years ago that I have a pituitary adenoma. I found out when I went to have my first physical when I was 18. The doctors say that by the effects of it I must of had it since I was 13 or 14. This "thing" makes me feel like I am not a complete woman. It is totally depressing in every way! I had high hopes of becoming a model until I was 15 and started having the "side effects" from the pituitary adenoma. It makes you overweight, no periods (which is nice at first then it makes you feel like not a woman - then you realize you cant have kids as long as you dont have a period), Pains in your head that are so immense and painful (sometimes lasting for days and nothing you can take will get rid of it), etc. It is really embarrassing at times because I am married now and I am afraid to show my body to my husband. The pituitary adenoma of what I understand about it which isnt much is that it makes you overweight, tired, cranky, high hormone levels, lactating (embarrassing), pains in your head (not headaches it is different almost unbarable), and NO children. I do not understand this pituitary adenoma very well. I have been unable to treat this "thing" since I found it almost because I am unable to get insurance. So I have NO idea if it has grown or if I could die tomorrow. It is the scariest thing. I was wondering if you can find out information on this pituitary adenoma for me? Anyone who has gone through it, I would like to talk to. How to treat it? If there are any doctors that would help someone without money and insurance (like me)? How do they treat it? What are the success rates? Will I ever be able to have children? How do I get rid of the pains in my head? Will I ever be "skinny" again? Please help me Tyra! If anyone can then I know you can! I am desperate with no other way to go... I wait in desperation. Thank you!

Hi Tyra, Love your show. You are really evolving as a talk show host and one day you'll be an even stronger force to recon with. Unfortunately Tyra I agree with some of the comments below. Please don't leave those guest hanging, or any of your following fans. You owe it to them to do a show update on the unusual medical disorder's. After all, why would any of them dare show there face on national tv about something so embarasing if they were not going to get help or advice that they need. Well Tyra, keep up the good work and we look forward to the update.

Todd

hi tyra,
I would introduce myself but I would like it more if i kept it a secret.. let's just say im embarrassed.. i watched this episode and i was really shocked. honestly, it touched me because i thought i was the only one. I have that disorder that Tammy had. Trimethyaminuria. I cry every night because when i think back i used to be really happy. now everything just feels depressing.. i cant take this anymore. But is there anyway i could get a hold of tammy? like her email address? please, i know its all late to post something on this but i finally had the courage to face it.. i wanna know more about it. please, please, please write me back. I wrote you on your fan mail expecting to get an email back but i guess it was just one of those people who try to give you a free shirt telling me that there were too many emails.

Hi Tyra,
I was sitting in my dentists waiting room when I saw your show on disorders. I am a 25 year old African woman who suffers from excessive sweating. This happens daily, in hot cold or normal weather and it happens only in my armpits. I feel very embarrased when I am all dressed for work, an interview or just going out and Im wet under my arms. Ive tried putting klinex under my arms and using sanitary pads to absorb the sweat but nothing has worked. I went for an opperation to stop this sweating in early 2004 and I was completely dry for about 3 months and had started buying light colour clothing until it all came back like a nightmare. It came back worse as the left armpit sweats more than the right and I started sweating even at night when I asleep. I have since been to the doctor who opperated on me but he said he cannot do anything and has since passed away.This takes the confidence away and I sometimes cannot go out, especially in summer as it gets worse. I cannot wear the colour or type of clothing that I want as a result of this. I would like to thank you for addressing such issues and am very happy for the lady you helped on your show as I know what this feels like. I am in South Africa and cannot afford the treatment that she got and would like to get help on my problem. Thanks again Tyra, people just think dont wear roll-on or anti persparents and that just hurts as I have tried every brand but cannot get dry.

It's funny you people actually think that Tyra actually gives a damn about your problems.

Just think.

She didn't help any of those people on the trapped inside your house episode.
In fact?...Where are they?...Where's the update????

Word on the street is that young lady with the halitosis condition is homeless.

Tyra just basically made exploits out of them, made it seem as if it was some
kind of freak show then sent them home without any help what so ever.


She only invited these people on the show to display that she is capable of converting from a
successful top model run-way career to a talk show host so that no one would judge her and think she
has no business in this territory let alone industry.

Tyra you are no Oprah.
But if you really give a
care even though you say you are the "queen of cheap"...put your money where your mouth is and help those people. Because whether you know it or not people are watching you and you are loosing more fans
than you are gaining every day based on the moves you posed on this episode.

And if you cannot help them at least help yourself and get a clue you'll never be Oprah.

Sincerely,


Mysterious.

I thought after my first post, that I should explain a bit more about RSD/CRPS.
Here are two poems, one about the pain we are forced to deal with, and the second is a poem to people NOT living with RSD.

THE DEPTHS OF DARKNESS(RSD/CRPS)

Let me introduce myself to you,
I am pain.
Not just pain, but Chronic Pain.
Sometimes I am a hot searing pain,
other times I am a sharp shooting pain,
cutting through you like a knife.
And yet at other times I am like a root canal or toothache, that never goes away.
If left uncontrolled, I will rob you of your humor,
I will rob you of your friends and rob you of your dignity.
I will rob you of your job and make your family miserable.
I will take away from you everything that is dear to you
including your very soul.
You can not see me,
As I am invisible to the human eye.
Therefore one should not judge someone
who knows me on a constant daily basis,
for I do not ever go away.
I do not have any friends,
for if left alone,
I destroy them.
If you think you are safe from me,
Please think more than once.
For I can become a part of you,
as quickly as a snow flake falling from the sky;
as easily as a leaf falling from a tree
or raindrops falling from the sky.
No one wants me as a friend;
Because I Am The Enemy!


--Letter to people without RSD:

Having chronic pain means many things change, and a lot of them are
invisible.
Unlike having cancer or being hurt in an accident,
Most people do not understand even a little about chronic pain and its
effects, and of those that think they know,
many are actually misinformed.

In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me
before you judge me.

Please understand that being sick doesn't mean I'm not still a human
being.
I have to spend most of my day in considerable pain and exhaustion,
and if you visit,
Some times I probably don't seem like much fun to be with, but I'm
still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the
time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy".
When you've got the flu, you probably feel miserable with it, but I've
been sick for years.
I can't be miserable all the time.
In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy.
that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or
that I'm getting better, or any of those things.
Please don't say, "Oh, you're sounding better!" or "But you look so
healthy!" I am merely coping.
I am sounding happy and trying to look normal.
If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't
necessarily mean that I can stand up for twenty minutes, or an hour.
Just because I managed to stand up for thirty minutes yesterday
doesn't mean that I can do the same today.
With a lot of diseases you're either paralyzed, or you can move.
With this one, it gets more confusing everyday.
It can be like a yo-yo. I never know from day to day, how I am going
to feel when I wake up.
In most cases, I never know from minute to minute.
That is one of the hardest and most frustrating components of chronic
pain.

Please repeat the above paragraph
substituting, "sitting", "walking", "thinking", "concentrating",
"being sociable" and so on, it applies to everything.
That's what chronic pain does to you.

Please understand that chronic pain is variable.
It's quite possible (for many, it's common) that one day I am able to
walk to the park and back, while the next day I'll have trouble
getting to the next room.
Please don't attack me when I'm ill by saying, "But you did it
before!" or "Oh, come on, I know you can do this!"
If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the
last minute.
If this happens, please do not take it personally.
If you are able, please try to always remember how very lucky you are,
to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me
feel better, and can often make me seriously worse.
You don't know what I go through or how I suffer in my own private time.
Telling me that I need to exercise, or do some things to "get my mind
off of it", may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't
you know that I would?
I am working with my doctors and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more,
try harder".
Obviously, chronic pain can deal with the whole body, or be localized
to specific areas.
Sometimes participating in a single activity for a short or a long
period of time can cause more damage and physical pain than you could
ever imagine.
Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language.
Also, chronic pain may cause secondary depression
(wouldn't you get depressed and down if you were hurting constantly
for months or years?),
but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in
bed, or take these pills now, that probably means that I do have to do
it right now, it can't be put off or forgotten just because I'm
somewhere, or I'm right in the middle of doing something.
Chronic pain does not forgive,nor does it wait for anyone.

If you want to suggest a cure to me, please don't.
It's not because I don't appreciate the thought, and it's not because
I don't want to get well.
Lord knows that isn't true. In all likelihood, if you've heard of it
or tried it, so have I.
In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case
with herbal remedies.
It also includes failure, which in and of itself can make me feel even
lower.
If there were something that cured, or even helped people with my form
of chronic pain, then we'd know about it.
There is worldwide networking (both on and off the Internet) between
people with chronic pain.
If something worked, we would KNOW. It's definitely not for lack of
trying.
If, after reading this, you still feel the need to suggest a cure,
then so be it.
I may take what you said and discuss it with my doctor. If I seem
touchy, it's probably because I am.
It's not how I try to be. As a matter of fact, I try very hard to be
normal.
I hope you will try to understand.
I have been, and am still, going through a lot.

Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind.
It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this,
and live my life to the best of my ability.
I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you
have been in my shoes, but as much as is possible, I am asking you to
try to be understanding in general.

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the
cleaning.
I may need you to take me to the doctor, or to the store. You are my
link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss
and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot
Thank you, and please help us find a cure to this unknown disease.

Gina Guerre,
I suffer from the same disease you do. I hope you check back to this and see it, as i am a 15 year old girl from canada, struggling on a daily basis with RSD.
I used to be such an active teenager playing, rugby,soccer,track,and of course dancing. I can no longer play ANY of those sports, let alone barely walk. I have RSD in one leg majorly, but both legs and one arm. Sometimes I don't sleep for days because of the pain. It is a struggle to just get up, and get dressed the pain is so severe. the pain is registered as gina said on the mcgill pain scale as a 42/50. this disease is truly devastating. it took me 4 hospitals, 9 doctors and numerous tests to even diagnose me, it is not a recognized disease at all. please tyra, if possible, do another show on rare diseases and PLEASE feature RSD/CRPS. it is a crippling disease that i may have to face for the rest of my life. we need awareness and we need help to find a cure. thank you.
Kerri
Nova Scotia, Canada

Hi tyra I am a coach at the high school I graduated from. I have been working in the fitness center coaching the kids in weight lifting. There is a girl that has a very unusual and bad odor to herself. I think it might be that Fish odor syndrome. I just don't know what to do because it is bad. I don't know if anyone has told her or if she knows that she has this odor. Maybe I should just leave it alone. I don't know.


Luis

 

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