On August 24th, 2012, Team Mackenzie held a spaghetti feed dinner to raise money. The food was awesome, there was a silent auction, raffle tickets and a LOT of people and a LOT of support for Mackenzie and her family.
I just received word from Mackenzie's mom that Team Mackenzie achieved our goal by raising enough money to start a nonprofit organization for Ollier's Disease. This is fantastic news because currently, Ollier's is SO rare that there really isn't a lot of support in place for families facing this diagnosis. (I'm told that Ollier's numbers are actually 3 people in a MILLION will be diagnosed with this disease, which is contrary to the information I found online and posted previously.) To make matters worse, because this disease is so rare, there is NO protocol in place for monitoring and treating Ollier's Disease. Our goal is to start getting these things in place and to provide a place for families to turn for support. No one should have to face a disease with little to no knowledge of what they are dealing with and what they are up against and we are out to change that. The long term goal is to start a foundation for Ollier's Disease... and it looks like we are off and running.
As we get organized and more information becomes available, I will be keeping this blog updated. Please follow us so you can stay in the know. And as always, if you have information on Ollier's Disease that you would like to share or would like to share your story on this blog, feel free to send it to me via email at marilyn.russell08@gmail.com.
Thank you so much!!!
Team Mackenzie
Thursday, August 30, 2012
Sunday, August 26, 2012
Raising Awareness For Ollier's Disease
On July 12th 2012, my friends daughter, Mackenzie was diagnosed with Ollier's Disease. This disease is not hereditary and is extremely rare with an occurance of 1 case for every 100,000 people and is usually diagnosed in the first decade of life... Mackenzie is the only case to ever be diagnosed in the Sacramento area and there isn't much information or support available for Mackenzie and her family. The goal of this blog is to raise awareness and support for Mackenzie and to provide education about Ollier's Disease.
Ollier's Disease is best described as follows:
Enchondromas are common intraosseous, usually benign cartilaginous tumors, that develop in close proximity to growth plate cartilage. When multiple enchondromas are present, the condition is called enchondromatosis also known as Ollier disease. The estimated prevalence of Ollier disease is 1/100,000. Clinical manifestations often appear in the first decade of life. Ollier disease is characterized by an asymmetric distribution of cartilage lesions and these can be extremely variable (in terms of size, number, location, evolution of enchondromas, age of onset and of diagnosis, requirement for surgery). Clinical problems caused by enchondromas include skeletal deformities, limb-length discrepancy, and the potential risk for malignant change to chondrosarcoma. The condition in which multiple enchondromatosis is associated with soft tissue hemangiomas is known as Maffucci syndrome. Until now both Ollier disease and Maffucci syndrome have only occurred in isolated patients and not familial. It remains uncertain whether the disorder is caused by a single gene defect or by combinations of (germ-line and/or somatic) mutations. The diagnosis is based on clinical and conventional radiological evaluations. Histological analysis has a limited role and is mainly used if malignancy is suspected. There is no medical treatment for enchondromatosis. Surgery is indicated in case of complications (pathological fractures, growth defect, malignant transformation). The prognosis for Ollier disease is difficult to assess. As is generally the case, forms with an early onset appear more severe. Enchondromas in Ollier disease present a risk of malignant transformation of enchondromas into chondrosarcomas.
Its a lot of medical speak of course, which can be frightening and confusing to someone who is not familiar with medical terminology. Simply put, Ollier's disease is the growth of tumors in growth plate cartilage. It affects the childs ability to grow and develop normally, usually requires surgical treatment and has about a 20-25% risk of those tumors becoming cancerous.
In Mackenzie's case, the tumors have been discovered through out her body and the doctors have raised her cancer risk to 50 %. Shes only 5 years old and her parents and family are terrified of what lies ahead. Family, friends, and our community are rallying to provide support during this trying time and we will continue to support them through their journey.
Please follow this blog and pass it on. Our goal is to educate as many people as we can about Ollier's Disease and to make sure that anyone who finds themselves in this situation has a place to turn for support and education. Join us and help spread the word....
Thank You So Much!!!
Sincerely, Team Mackenzie!!!!!
Ollier's Disease is best described as follows:
Enchondromas are common intraosseous, usually benign cartilaginous tumors, that develop in close proximity to growth plate cartilage. When multiple enchondromas are present, the condition is called enchondromatosis also known as Ollier disease. The estimated prevalence of Ollier disease is 1/100,000. Clinical manifestations often appear in the first decade of life. Ollier disease is characterized by an asymmetric distribution of cartilage lesions and these can be extremely variable (in terms of size, number, location, evolution of enchondromas, age of onset and of diagnosis, requirement for surgery). Clinical problems caused by enchondromas include skeletal deformities, limb-length discrepancy, and the potential risk for malignant change to chondrosarcoma. The condition in which multiple enchondromatosis is associated with soft tissue hemangiomas is known as Maffucci syndrome. Until now both Ollier disease and Maffucci syndrome have only occurred in isolated patients and not familial. It remains uncertain whether the disorder is caused by a single gene defect or by combinations of (germ-line and/or somatic) mutations. The diagnosis is based on clinical and conventional radiological evaluations. Histological analysis has a limited role and is mainly used if malignancy is suspected. There is no medical treatment for enchondromatosis. Surgery is indicated in case of complications (pathological fractures, growth defect, malignant transformation). The prognosis for Ollier disease is difficult to assess. As is generally the case, forms with an early onset appear more severe. Enchondromas in Ollier disease present a risk of malignant transformation of enchondromas into chondrosarcomas.
Its a lot of medical speak of course, which can be frightening and confusing to someone who is not familiar with medical terminology. Simply put, Ollier's disease is the growth of tumors in growth plate cartilage. It affects the childs ability to grow and develop normally, usually requires surgical treatment and has about a 20-25% risk of those tumors becoming cancerous.
In Mackenzie's case, the tumors have been discovered through out her body and the doctors have raised her cancer risk to 50 %. Shes only 5 years old and her parents and family are terrified of what lies ahead. Family, friends, and our community are rallying to provide support during this trying time and we will continue to support them through their journey.
Please follow this blog and pass it on. Our goal is to educate as many people as we can about Ollier's Disease and to make sure that anyone who finds themselves in this situation has a place to turn for support and education. Join us and help spread the word....
Thank You So Much!!!
Sincerely, Team Mackenzie!!!!!
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