5. A Life Without Pain
Gabby Gingras is an energetic 9-year-old girl who is determined to be just like every other child around her. What makes her different from most of us, is a rare and extremely unusual disease known as CIPA – congenital insensitivity to pain with anhidrosis. There are only 100 documented cases of CIPA around the globe.
Gabby was born without the ability to feel pain, cold and heat. It might seem like an amazing gift, but actually it’s a devastating condition. Pain sensitivity is crucial, because pain works similar to a warning and defense mechanism. Gabby’s parents noticed something wasn’t right when their daughter was five months old. She was biting her fingers until they bled. Later on, the girl lost an eye and severely injured the other one due to excessive rubbing and scratching. Various measures have been taken to prevent these types of accidents. The desperate parents are doing their best under the difficult and challenging circumstances. Brave Gabby was the subject of a documentary. “A Life Without Pain” by Melody Gilbert. It tells the powerful story of Gabby Gingras.
4. Allergic to H20
Whether it’s taking a hot bath, brushing your teeth, cleaning the house, or simply quenching your thirst, water is an essential part of our daily routine. We just cannot live without water! That is why it is a wonder to us that people can be allergic to water. Believe it or not, some people suffer from extremely rare physical forms of urticaria known as Aquagenic Urticaria and Aquagenic Pruritus – both of which are ‘allergic’ reactions to
water. They are so unusual, that only about 30 or 40 cases are documented worldwide.
Ashleigh Morris (21, Australia) and Michaela Dutton (23, England) developed a one in 230 million skin disorder – Aquagenic Urticaria. If their skin comes in to contact with water, itchy red welts, lumps and blisters appear all over the body. Showering is a really painful experience for both of them. Michaela cannot drink water, coffee or tea, she cannot even eat fruits because they trigger the burning rash on the skin and make her throat swell up, but her body seems to tolerate Diet Coke. Ashleigh tries to avoid water as much as possible – she stopped doing sports and any other physical effort that makes her sweat. Aquagenic Urticaria is so extremely rare, that even doctors don’t fully understand the complex mechanism behind the bizarre skin disorder.
3. The Family That Couldn’t Sleep
FFI is the acronym of a fatal genetic sleep disorder called Fatal Familial Insomnia. Jay Schadler and Laura Viddy best describe the rare disease: “Those affected by FFI are forever trying and failing to fall asleep. The disease steals one’s sleep, mind and ultimately one’s life, and, before dying, one hovers for months in a twilight world.”
29-year-old Cheryl Dinges (left) is one of the members of a family that couldn’t sleep. Her family carries the gene for Fatal Familial Insomnia, such a rare condition that it is believed to affect only 40 families worldwide. Fatal Familial Insomnia killed their mother, grandfather and their uncle. Cheryl Dinges declined to be tested, even if her sister (right) didn’t inherit the mutation. FFI begins with mild twitching, panic attacks and insomnia. In time, patients start to hallucinate and insomnia becomes so severe that they totally lack the ability to sleep. Ultimately, patients develop dementia and, eventually, die. The mutated protein is called PrPSc. If only one of the parents has the mutated gene, there are 50% chances of inheriting and developing FFI.
2. Butterfly Children
The sad story of Sarah and Joshua Thurmond started when doctors diagnosed them with Epidermolysis bullosa (EB), another rare genetic disorder that cause the skin to be extremely fragile. Erosions and blisters occur because the skin layers lack a fibrous protein that is responsible for anchoring filaments to underlying tissues.
Joshua suffers from one of the most severe types of EB, Epidermolysis bullosa dystrophica. Unfortunately, his sister too, but she passed away on Oct. 8, 2009. The disease took her at the age of 20. According to medical studies, people born with EB have a life expectancy of about 30, maximum 40 years.
1. Giving Birth to a Mummy
Zahra Aboutalib, from Morocco, delivered a child she’d been carrying for almost half a century. This shocking yet fascinating story began in 1955 when Zahra went into labor. She was rushed to a hospital, but after watching a woman dying on the operation table during a Caesarean section, Zahra fled back in her small village outside Casablanca. After the pains were gone and the baby stopped kicking, Zahra considered him a “sleeping baby”. “Sleeping babies” are, according to Moroccan folk belief, babies that can live inside a woman’s womb to protect her honor.
When Zahra was 75, the excruciating pains occurred again. Doctors performed an ultrasound test and discovered that her “sleeping child” was actually an ectopic pregnancy. What is even more amazing is how Zahra survived and how the dead fetus was accepted by the body just like another organ. Generally, this doesn’t happen. If not discovered in time, the growing fetus will eventually strain and burst the organ that contains it. Under these circumstances, the mother has few surviving chances. After nearly five hours, the surgeons successfully removed Zahra’s calcified fetus.
Stone babies, lithopedions, are an extremely rare medical phenomenon. According to the Journal of the Royal Society of Medicine, only 290 cases of stone babies have been documented.
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