To: Dr. Tom Frieden, Director of the Centers for Disease Control and Sylvia Mathews Burwell, Secretary of Health & Human Services
CDC: My dying bones demand my attention. Avascular Necrosis patients request yours.
Avascular Necrosis (AVN) patients have dead or dying bones. There are 20,000 new cases diagnosed, annually.
That means 20,000 people have had their lives irrevocably turned upside down by way of losing their profession/job, loss of financial stability, loss of mobility, or by enduring one replacement surgery after another, knowing that the new prosthesis comes with a very meager life-span of ten to fifteen years. Many patients do not get to enjoy those years due to infected implants, loosening of prosthesis, or the manifestation of AVN in other joints.
We suffer severe bone pain, daily. There is no cure! Replacement surgeries do not always end our suffering. It certainly has not ended mine.
I am a registered nurse. I have lost all of the above and more. Can I count on you to use your voice in raising national awareness of this disease and afford it time in the spotlight with other diseases, such as ischemic heart disease and cancer? While AVN is not associated with increased morbidity, it certainly causes the same intensity of pain experienced by patients with bone cancer and those who have suffered a heart attack. Loss of blood flow and oxygen causes severe pain to any deprived cell, tissue, organ, or system.
We need a committed team of researchers to identify all causative factors of AVN then a treatment plan needs to be clearly outlined. We are thankful for quantity of life but we CRAVE quality of life even more. Can we count on you?
That means 20,000 people have had their lives irrevocably turned upside down by way of losing their profession/job, loss of financial stability, loss of mobility, or by enduring one replacement surgery after another, knowing that the new prosthesis comes with a very meager life-span of ten to fifteen years. Many patients do not get to enjoy those years due to infected implants, loosening of prosthesis, or the manifestation of AVN in other joints.
We suffer severe bone pain, daily. There is no cure! Replacement surgeries do not always end our suffering. It certainly has not ended mine.
I am a registered nurse. I have lost all of the above and more. Can I count on you to use your voice in raising national awareness of this disease and afford it time in the spotlight with other diseases, such as ischemic heart disease and cancer? While AVN is not associated with increased morbidity, it certainly causes the same intensity of pain experienced by patients with bone cancer and those who have suffered a heart attack. Loss of blood flow and oxygen causes severe pain to any deprived cell, tissue, organ, or system.
We need a committed team of researchers to identify all causative factors of AVN then a treatment plan needs to be clearly outlined. We are thankful for quantity of life but we CRAVE quality of life even more. Can we count on you?
Why is this important?
I have Avascular Necrosis secondary to Sickle Cell Anemia. Sickle Cell Anemia is an awful, life-threatening disease which causes frequent, painful, hemolytic crises. Sickle Cell Anemia will eventually cost me my physical life. AVN, in the meantime, is robbing me of everything else. Mutual sufferers of AVN around the country and the world need this disease to be understood. We need to be heard and validated. We need a cure. When? Now!!!