Rare bone diseases in children // Drug Repurposing

Rare bone diseases in children

team joeyMy 12-year-old son Joey is five in a million. He is an A/B student, member of the chess club, on the Odyssey of the Minds team, loves to hang out with his friends and is hilarious. But that’s not what makes him five in a million. Joey has Langerhans Cell Histiocytosis, a rare cancer-like disease that causes his white blood cells to attack his body. The disease attacked his hip bone, eating it away and causing him to need a bone graft at 10-years-old. He spent four months in a wheelchair, time using a walker, then crutches, followed up by a year of physical therapy. Although there was question as to whether or not he would walk again, he can run, play and do most “normal” kid things now.

But “normal” is a funny word when you have a rare disease. Our lives will never be the same “normal” we once knew. Just like cancer, we worry the Histio will attack Joey’s body again. It could attack his bones, skin or organs. Although Joey is not at high risk for this, Histio can kill. If it attacks again, he will need chemotherapy. He’s in what doctors consider remission right now but he has scans regularly and that fear is always in the back of our minds. This all started with some leg pain so if Joey has an ache in any part of his body we worry. We try not to, but we do.

Just like many other rare diseases, there is no known cause, no known cure and no money for research. Histio isn’t well known so large companies don’t write big checks for research. The government doesn’t allocate money for research. Most of the money raised for research comes from the families dealing with Histio, the families who also often have thousands of dollars in medical bills to pay.

Joey is Five in a Million: Rare Disease Day 2014Today, February 28, is International Rare Disease Day. This day is very important to my family and to families across the country and around the world who often feel alone in their medical journeys.

It’s a day specifically to raise awareness of the 7, 000 rare diseases that affect 30 million people in the United States. It’s a day to realize that 50% of the people with rare diseases are children and that 30% of them will not live to see their fifth birthday. Out of those 7, 000 rare diseases, the FDA hasn’t even approved a drug for 95% of them.

My 12-year-old son is one of the lucky ones and he embraces that. He also hopes to stay that way, to stay in remission. He has chosen to be an advocate for those who can’t fight for themselves and bring awareness. He was recently recognized by the city of Fort Thomas, Kentucky where the mayor made a proclamation honoring International Rare Disease Day and Histiocytosis in honor of Joey. He has distributed information throughout our neighborhood and spread the word at school.

Rare Disease Day is important to my family because it helps bring awareness to all these diseases that cause people to suffer. It brings awareness to the fact that there is incredibly little funding for research.

My hope for today is that people will learn about Rare Disease Day and be inspired to open their hearts, their mouths (spread the word) and ultimately their wallets to support the efforts of organizations that are working hard to understand more about rare diseases and how to treat them.

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Oral sex and jerk offs

by Deb_ISIS

Dear Saphr500,
There is pretty much no disease risk from jerking off a guy, except for the rare transfer of skin-to-skin diseases. In San Francisco, staph infections have been on the rise in the gay community - staph is one of the skin-to-skin infections.
Oral sex on a man has a small risk of transmitting HIV from an infected partner. Unprotected oral sex on an infected partner can transmit syphilis, gonorrhea, and herpes. The good news is that both syphilis and gonorrhea are treatable, so if you are having unprotected oral sex and/or you have any unusual signs or symptoms of an STD, go get a full STD checkup

Three things I've seen

by grad-student

1. The overall percentage of pets who get vaccinated has always been low. Heck, the overall percentage of pets who ever even see a vet is low! But in the past, virtually all of those fortunate "vetted" pets got vaccinated. That is changing, as owners choose for whatever reasons not to get their pets vaccinated. So it makes sense to me that vets are now seeing in their patients diseases which were very rare 10 years ago. 10 years ago their patients were vaccinated!
2. There used to be little contact between animals in institutional settings and vetted pets. 25 years ago people got a new pup from a hobby breeder or a bridge partner whose pet dog had had a litter

Are there people who eat poop?

by -

Yes, we all have, at one point or another. One of the main ways that diseases and parasites spread is through the consumption of food and water contaminated with feces. This happens because people don't wash their hands carefully after pooping or changing a diaper or scratching their butt. It can also happen through careless disposal of diapers. Our microbiologist here on Guam says that one dirty diaper in Tumon Bay can send the bacteria count through the ceiling.
But of course, what you want to know is, are there people who eat poop on purpose? Again, the answer is yes

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Shire Says Holders Deserve Higher as AbbVie Eyes Offer  — Businessweek
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Unusual Microorganisms: Gram-Negative Fastidious Species (Microbiology Series, V. 10)
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