Rare Disease Day 28 February 2018
Rare Disease Day 28 February 2018
When the body is falling apart. And you feel like you have nothing of value to offer God or anyone else.
Below is a post from Our Daily Bread
Nothing Is Useless June 12, 2017
from Our Daily Bread
Read: 1 Corinthians 15:42–58
“Nothing you do for the Lord is ever useless.”
1 Corinthians 15:58
‘Nothing Is Useless’
A Story of Hope and Encouragement
In my third year battling discouragement and depression caused by limited mobility and chronic pain, I confided to a friend, “My body’s falling apart. I feel like I have nothing of value to offer God or anyone else.”
Her hand rested on mine. “Would you say it doesn’t make a difference when I greet you with a smile or listen to you? Would you tell me it’s worthless when I pray for you or offer a kind word?”
Do what you can with what you have and leave the results to God. I settled into my recliner. “Of course not.”
She frowned. “Then why are you telling yourself those lies? You do all those things for me and for others.”
I thanked God for reminding me that nothing we do for Him is useless.
In 1 Corinthians 15, Paul assures us that our bodies may be weak now but they will be “raised in power” (v. 43). Because God promises we’ll be resurrected through Christ, we can trust Him to use every offering, every small effort done for Him, to make a difference in His kingdom (v. 58).
Even when we’re physically limited, a smile, a word of encouragement, a prayer, or a display of faith during our trial can be used to minister to the diverse and interdependent body of Christ. When we serve the Lord, no job or act of love is too menial to matter.
Jesus, thank You for valuing us and using us to build up others.
Do what you can with what you have and leave the results to God.
I just entered a contest; help me get to the top of the leaderboard!
I have Avascular Necrosis/ Osteonecrosis and the condition/disease is rare, so rare there was no cause ribbon for anyone to identify with.
I created a few varieties and now the AVN community finally has a ribbon.
My goal is to educate and provide hope and support to anyone suffering from this condition.
Mine was caused by trauma to the knee (medial meniscus tear) in 2014.
So what is Avascular Necrosis?
Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse.
Avascular necrosis most commonly occurs in the hip. Other common sites are the shoulder, knees, shoulder, and ankles. But AVN can attack any bone or joint anytime and age is not a factor
Who Gets Avascular Necrosis and What Causes It?
As many as 20,000 people develop AVN each year. Most are between ages 20 and 50. But young children are also affected it’s called Leg Calves Perthes
For healthy people, the risk of AVN is smaller than someone with an underlying cause.
Most cases are the result of an underlying health problem or injury. Possible causes include:
Dislocation or fracture of the thigh bone (femur). Tear in meniscus, tear in shoulder, etc…
This type of injury can affect the blood supply to the bone, leading to trauma-related avascular necrosis. AVN may develop in 20% or more of people who dislocate a hip.
Chronic corticosteroid use. Long-term use of these inflammation-fighting drugs, either orally or intravenously, is associated with 35% of all cases of nontraumatic AVN.
Although the reason for this is not completely understood, doctors suspect these drugs may interfere with the body’s ability to break down fatty substances. These substances collect in the blood vessels making them narrower and reduce the amount of blood to the bone.
Excessive alcohol use. Much like corticosteroids, excessive alcohol may cause fatty substances to build in the blood vessels and decrease the blood supply to the bones.
Blood clots, inflammation, and damage to the arteries. All of these can block blood flow to the bones.
Other conditions associated with nontraumatic AVN include:
Gaucher’s disease, an inherited metabolic disorder in which harmful quantities of a fatty substance accumulate in the organs
Sickle cell disease
Pancreatitis, inflammation of the pancreas
Radiation therapy or chemotherapy
Decompression sickness, a condition that occurs when the body is subjected to a sudden reduction in surrounding pressure, causing the formation of gas bubbles in the blood
Symptoms of Avascular Necrosis
In its early stages, AVN typically cause no symptoms; however, as the disease progresses it becomes painful. At first, you may experience pain when you put pressure on the affected bone. Then, pain may become more constant. If the disease progresses and the bone and surrounding joint collapse, you may experience severe pain that interferes with your ability to use your joint. The time between the first symptoms and collapse of the bone may range from several months to more than a year.
Treatment for Avascular Necrosis
The goals of treatment for AVN are to improve or ensure function of the affected joint, stop the progression of bone damage, and reduce pain.
The best treatment will depend on a number of factors, including:
Stage of the disease
Location and amount of bone damage
Cause of AVN
If the cause of your avascular necrosis is identified, treatment will include efforts to manage the underlying condition. For example, if AVN is caused by blood clots, your doctor will prescribe medications to dissolve clots. If inflammation of the arteries is responsible, your doctor may prescribe anti-inflammatory medicines.
If avascular necrosis is caught early, treatment may involve taking medications to relieve pain or limiting the use of the affected area. If your hip, knee, or ankle is affected, crutches may be necessary to take weight off the damaged joint. Your doctor may also recommend range-of-motion exercises to help keep the affected joint mobile.
While these nonsurgical treatments may slow the progression of avascular necrosis, most people with the condition eventually need surgery.
Surgical options include:
Bone grafts, which involve removing healthy bone from one part of the body and using it to replace the damaged bone
Osteotomy, a procedure that involves cutting the bone and changing its alignment to relieve stress on the bone or joint
Total joint replacement, which involves removing the damaged joint and replacing it with a synthetic joint
Core decompression, a procedure that involves removing part of the inside of the bone to relieve pressure and allow new blood vessels to form
Vascularized bone graft, a procedure that uses the patient’s own tissue to rebuild diseased or damaged hip joints; the surgeon first removes the bone with the poor blood supply from the hip and then replaces it with the blood-vessel-rich bone from another site, such as the fibula, the smaller bone located in the lower leg.
I have made it my goal to learn and educate others who also have the same disease I do
I worked hard studied and also got tis certificate
I keep myself updated on all and any new treatments on AVN/ON
You have to be your own advocate but I also pride myself on being a voice for others
So I’m posting a link to the story I did for TheMighty last January
Which is also what led me to write the booklet about avn.