Archive for the tag: rare

8-Year-Old Girl Battling A Rare Brain Disease She Calls ‘Awesome’ | TODAY

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When Ellie McGinn was only 3, her parents started noticing she had issues with balance. After many tests, she was diagnosed with a rare disease that’s hard to pronounce: leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation. Kathie Lee and Hoda share the brave young girl’s story (and reveal how you can help).
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8-Year-Old Girl Battling A Rare Brain Disease She Calls ‘Awesome’ | TODAY

Top 10 Rarest Diseases You’ve Never Heard Of // Subscribe: http://goo.gl/Q2kKrD // TIMESTAMPS BELOW
Be sure to visit our Suggest Tool and Submit Ideas that you would like to see made into Top 10 videos! http://www.WatchMojo.com/Suggest
There are some mystery diseases you may never have heard of. From Foreign Accent Syndrome, to the Tree Man Illness, to Hutchinson-Gilford Progeria Syndrome – which inspired “The Curious Case of Benjamin Button” – these are some of the strangest known medical conditions. WatchMojo counts down ten fascinating rare illnesses.

Want to scare yourself into hypochondria even more? Check out our videos on the Top 10 Diseases That Kill You Quickly: https://youtu.be/DlQu2AFC8JU, Top 10 Most Dangerous Surgeries: https://youtu.be/zE8wDOl9W34 and Top 10 Worst Epidemics in History: https://youtu.be/tefAgSl-SWs.

00:44 #10: Foreign Accent Syndrome
01:48 #9: Microcephaly
02:32 #8: Epidermodysplasia Verruciformis
03:18 #7: Fibrodysplasia Ossificans Progressiva (FOP)
04:00 #6: Hutchinson-Gilford Progeria Syndrome
04:50 #5: Harlequin-Type Ichthyosis
05:39 #4: Congenital Analgesia
06:24 #3, #2 & #1???

Special thanks to our users Ayoub Mahmoud, Dubstep Choo Chen Ling, MikeMJPMUNCH, EmJay and RedHood for suggesting this idea! Check out the voting page at http://www.watchmojo.com/suggest/Top%20Ten%20Rarest%20Diseases

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How a rare blood disorder made me a mother | Dana-Farber/Boston Children's

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Learn more: http://www.danafarberbostonchildrens.org/thalassemia

Tracy Antonelli was diagnosed with thalassemia at the age of 4; her body can’t make enough oxygen-carrying red blood cells. When she and her husband were ready to start a family, they looked to China, where thalassemia is relatively prevalent, and found three special girls.

The care that the girls now receive at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center Includes regular blood transfusions, medication to remove excess iron from their bodies, and careful monitoring.

The thalassemias are a group of inherited blood disorders in which the genes that produce hemoglobin, the protein in red blood cells that carries oxygen from the lungs to all parts of the body, are broken. As a result, the red blood cells do not contain enough hemoglobin, causing anemia that can range from mild to life threatening. Thalassemia can come in different forms depending on the genetic mutations causing it. The transfusion-dependent form, also called thalassemia major or Cooley’s Anemia, requires lifelong follow-up care and regular blood transfusions. Some other forms are more readily managed and may require little or no treatment.

Thalassemia Treatment at Dana-Farber/Boston Children’s

At the Dana-Farber/Boston Children’s Thalassemia Program, our experts provide comprehensive care for children and adults with all forms of thalassemia. For many appointments and certain procedures, your child also can receive care at one of our satellite offices. Treatment for thalassemia depends on the subtype of the disorder, but may include:

– blood transfusions for anemia, based on severity
– regular and comprehensive monitoring for complications of thalassemia and of treatments
– iron chelation therapy, to remove excess iron from the body
– for certain cases, stem cell transplantation to replace the blood-forming stem cells with the defective hemoglobin gene(s)

Dickson and Daniel discuss protozoan parasites of minor medical importance, including Babesia, Cystoisopora belli, Cyclospora cayetanensis, Naegleria fowleri, and more.