When Bones Weld
Fibrodysplasia Ossificans Progressiva, or FOP, is a rare autosomal dominant disorder first reported in 1648 in which the soft connective tissue of the body literally turns to bone, painfully freezing the body in an immobile state. Only about 2,500 people in the world have FOP. The skeleton of Harry Eastlack, a FOP sufferer, is on display at the Mutter Museum in Philadelphia.
Sheets of bone cover Harry Eastlack’s back. Ribbons, sheets, and plates of bone lock his spine to his skull and his skull to his jaw. Additional ribbons and cordons of bone span from the spine to the limbs and immobilize the shoulders, elbows, hips, and knees. Thin stalagmites of bone launch themselves from his pelvis and thighs. His upper arms are welded to his breastbone by slender white bridges of bone that cross his immobilized rib cage.
Another FOP skeleton, belonging to a veteran, lives at the National Museum of Health and Medicine on the Walter Reed campus in Washington. It sits in a rocking chair where it lived out the last years of its life with a hole punched in its teeth so that food could be forced through its owner’s clenched jaws.
April 13th, 2006 at 8:05 am
This is the disease that Mick Mars from Mötley Crüe has. It’s incredibly painful.
April 27th, 2006 at 2:21 pm
Didn’t they just find the gene responsible for this disease?
April 27th, 2006 at 4:58 pm
Mick Mars actually has ankylosing spondilitis, which is cool, but not as cool as FOP.
April 27th, 2006 at 5:44 pm
Errata: Ankylosing spondilitis should be spelled Ankylosing spondylitis.
And just to clarify, it’s cool to be a rock star, it’s not cool to suffer from degenerative bone diseases.
May 10th, 2006 at 2:59 pm
The Discovery Channel has broadcast a program about FOP, called “The Girl Whose Muscles Turned To Stone.” It is due to air again on May 25.
June 9th, 2006 at 12:52 pm
I recommend “The Girl Whose Muscles Turned To Stone.” I saw it a month or so and it was incredibly interesting. The victims suffer horribly physically and mentally as they experience the unstoppable progression of the disease.
June 29th, 2006 at 4:30 pm
I saw that documentary; it’s a horrible condition, and they can’t even operate to remove bone growth as this accelerates the growth! How awful to have something you can’t just get the doctors to ‘fix’ like pretty much everything nowadays.
August 8th, 2006 at 11:40 pm
can you please tell me how the little girl who turned to stone is doing? i think her name is Lucinda. is there contact info.
thank you
melissa
August 14th, 2006 at 10:28 am
Thank you for referencing the skeleton specimen on display in our museum, The National Museum of Health and Medicine.
Peter Cluckey was born in 1882, enlisted in the Army at age 17 just after the Spanish-American War, retired from the service after 3 years, and rejoined in 1904. Two months after his second enlistment he experienced joint pain and stiffness after a horseback mounted drill held in cold rain. After several medical examinations he was diagnosed with “rheumatism chronic, articular, affecting both hips, knees, and ankle joints, and the right elbow.” Over the next 20 years his condition worsened to the point where every joint in his body became fused. Cluckey was moved into a sitting position so that he could be placed in a chair or on his side in bed to sleep. His front teeth were removed so that he could be fed soft foods. In his will, Cluckey donated his body to the museum and his skeleton has been on display seated in a wooden chair in the museum since his death in 1925.
We invite you to visit this fascinating specimen in person. Admission and parking are free.
Steven Solomon
Public Affairs Officer
National Museum of Health and Medicine
202-782-2200
http://www.nmhm.washingtondc.museum
September 1st, 2006 at 12:22 pm
There is an association called IFOPA, and it’s website is http://www.ifopa.org
I have been blessed to meet Dr. Kaplan, who has led the research in this horrid genetic disease. It is true that they found the gene this past April. A family friend has this disease, and she is slowly immobilizing.
My prayers are with all who have this condition.
September 27th, 2006 at 11:30 pm
Her name is Luciana…and she is doing good…according to a friend of the family who also has a daughter with the disease…she is 12 or 13 now..the friend visits often but didnt send any info on how we could find more out about Luciana…they live in England….this is all I know..
January 11th, 2007 at 2:35 pm
Here is a link to the Mütter Museum referenced in the blog entry which has a virtual tour covering their FOP specimen as well as other “Proceedings worthy” curiosities.
http://www.collphyphil.org/mutter.asp
January 12th, 2007 at 7:03 pm
Mick Mars has Ankylosing Spondylitis, not FOP. Check Wikipedia…..
September 7th, 2007 at 4:06 pm
my boyfriend is born with FOP,today 34 years old.he cannot sit on a chair,he was operated several times,the doctor didn’t know FOP.my question:is there any man in this world with FOP,who has a healty child?is it possible?we planned a marriage,I’m a healty woman.2500 FOP patients all around the world.listen to me:IF YOU HAVE CHILDREN W?THOUT FOP,contact me!!!
November 7th, 2007 at 11:05 am
I’m a pupil from germany and at school we watched a dokumentation about FOP. I was very impressed. It’s a very interesting, spectacular and heavy sickness. Since some month I seach for information about FOP! It’s very interesting, when I read your comments.