Another Day Another Victory

Awareness has been good many are responding making Avascular Necrosis Osteonecrosis Awareness Day one step closer to national awareness

Thanks to

Congressman Tim Ryan  Ohio who sent me this today

And thanks again to

Mayor Jamael Tito Brown – Youngstown Ohio

And

Senator Mike Rulli – Ohio

Who sent me awareness proclamations last week.

Its happening one state at a time.

I just heard from 10 states that they also will be supply this.

Life is always good but this week have been fantastic

Scroll on other posts to see other proclamations

 

 

Link to eBooklet   Avascular Necrosis Booklet by Deborah L. Andio

Thank You Proud Moment

Thank you to Youngstown Ohio Mayor Jamael Tito Brown and Senator Michael Rulli and Senate President Larry Obhof

What an honor

Help me raise awareness today and please like and share this post.

Thank You.

1st annual

#AvascularNecrosis #Osteonecrosis

#AwarenessDay #November29

AvascularNecrosis/Osteonecrosis Support Int’l

https://www.vindy.com/news/local-news/2019/11/city-state-recognize-poland-woman-with-rare-disease/

Official Proclamation Avascular Necrosis-Osteonecrosis Awareness Day November 29

Finally Avascular Necrosis-Osteonecrosis has an official awareness date.

The date is November 29

I have been working on proclamations for several months and I am in the process of getting the awareness day Nationally recognized as well.

I’m so grateful that our elected officials took the time to talk to me.

And set a date for AVN-ON awareness

I have heard back from several officials that will also be adopting November 29 .

I have been advocating for over 5 years on Avascular Necrosis -Osteonecrosis and I am proud and grateful that our elected officials are also recognizing this awareness day.

What is a proclamation?

A proclamation is a formal way to make a public announcement or declaration. Government officials, such as mayors and state legislators, often issue proclamations to announce upcoming events or celebrations or to increase public awareness of particular issues.

I am proud to say I was issued a proclamation by my local Mayor of Youngstown Ohio

And also by Senator Michael Rulli of Ohio.

I have heard from Washington DC and it’s a longer procedure but it’s being looked at.

Right Now AVN-ON falls under the rare disease / disorder category.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983. Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatment

Well I am hoping that now that AVN is getting recognition we can get more research to help all of us that are dealing with this painful condition.

Thank you to

Senator Michael Rulli -Ohio

and

Mayor Jamael Tito Brown – Youngstown Ohio

For helping us who suffer finally get the awareness day we deserve

God Bless You and Thank You.

Official Proclamation Avascular Necrosis -Osteonecrosis Awareness Day is November 29,2019 and every year after.

WegoHealthAwards 2019 ©

Wow I am beyond honored I’ve now also been

Nominated for Patient Leader Hero- Healthcare Collaborator – Rookie of The Year and Best In Show Blog

Endorsements Now Open If You Would Like to Vote (link below)

I have been nominated for the past few years in various categories

Thank You for considering Endorsing my nominations

It’s deeply appreciated

Thank You

WegoHealthAwards Link

Is Your Hip Pain The Sign of a Rare Condition?

Your hips are largest and most powerful of muscle groups—the glutes, quads, and hamstrings—all connect at the hips, and they allow you to walk, run, climb. The hip joint is crucial to all movement, in sports and day-to-day life, which is why persistent hip pain can be such a pain in the ass literally and often debilitating.

hip

 

Wear and tear on your hip joint can worsen with age. According to the Centers for Disease Control and Prevention, 7 percent of adults in the U.S. suffer from hip pain, the third most common joint pain behind shoulder pain, at 9 percent, and knee pain, at 18 percent. There’s also a growing prevalence of young athletes with hip injuries, especially young women, due to repetitive overuse and acute trauma.

Trauma can sometimes lead to osteonecrosis  in any joint but we are focusing on the hip , and some of the medications given to help inflammation and strengthen bones can also be a cause of osteonecrosis aka avascular necrosis.

Your Hip Pain May be the Sign of a Rare Condition

If you have hip pain don’t always brush it off as arthritis, if it persists, get it checked out to be safe

Persistent or worsening hip pain warrants a visit to your health care provider and possibly a sports medicine specialist or ortho. Some problems, particularly hip stress fractures, are commonly misdiagnosed due to the confusing presentation of symptoms.

 

A thorough evaluation is necessary and often includes X-rays and other studies, such as an MRI or bone scan. As with all injuries, the absence of pain does not mean that all is well. Strength and flexibility deficits must be addressed to allow a healthy return to helping your quality of life.

 

 

Although a person may not initially experience symptoms, hip pain is usually the first indicator. The earlier the diagnosis is achieved, the better the patient’s potential outcome. AVN has four stages that can progress over a period of several months to more than a year. In Stage I, the hip is healthy; in Stage II, the patient experiences mild to moderate pain in direct proportion to the deterioration of the head of the femur (or ball of the hip joint). By Stage III, usually the patient will find it difficult to stand and bear weight on the hip, and joint movement will be painful. During this stage, the ball of the hip has deteriorated to what is called a subchondral fracture and early collapse. Stage IV is a full collapse of the femoral head and degenerative joint disease (DJD).

 

Treatment for AVN is recommended based on the stage of the disease coupled with the age of the patient. In Stage I, medication and crutches may be prescribed to provide relief and enable the bone to heal on its own. This treatment may require the patient to be non-weight-bearing for up to six months. It also has a failure rate greater than 80-percent.

On the horizon treatments are stem cell.

 

Surgical treatment is recommended with a Stage II diagnosis, or very early in a Stage III diagnosis. A procedure, known as a core decompression, typically involves drilling one large hole in the core of the effected bone, with or without a bone graft, to reduced pressure and improve blood circulation in the hip. Another surgical option is the vascularized fibular graft, which takes a healthy piece of bone from the fibula, along with the artery or vein, and transplants and reattaches it into the hip, to help healthy bone grow. Recovery can take several months.

 

Because most patients are diagnosed in late Stage III or IV of the disease, when the bone quality of the femoral head is poor (subchondral fracture) or has collapsed, total hip replacement is the most successful treatment for AVN. This procedure replaces the damaged bone with artificial parts. Recovery takes about eight to twelve weeks. If left untreated, AVN progresses and results in pain and severe debilitating osteoarthritis.

Treatment decisions for AVN are ultimately up to the patient and are based on his or her lifestyle and goals. If you are suffering with hip pain, talk with your primary care doctor about a referral to an orthopedic surgeon

Please Help Me Raise Awareness©

I need you to help me get to my goal

I have started a petition to get the rare disease Osteonecrosis recognized by asking for an awareness month week or day. If they won’t allow a month.

I could use as many supporters as possible to help me and share this.

No money at all is needed.

I hope you will help me raise awareness

Take Action: We Need Osteonecrosis Awareness To Have The Month Of October to Recognized & raise awareness #Osteonecrosis #AvascularNecrosis please help and sign and share

Link requesting osteonecrosis awareness-month-october

Or copy and paste

https://www.petition2congress.com/ctas/osteonecrosis-awareness-month-october

To President Donald Trump, The U.S. House and The U.S. Senate
We, the patients of a rare disease called Osteonecrosis respectfully ask the United States of America in this petition to the US Congress to pass legislation to establish and recognize October as Osteonecrosis Awareness Month in the United States.
The people of the United States are called upon to observe the month of October with appropriate educational and awareness opportunities, and recognition.
With hundreds of thousands of US residents suffering from this disease and more being diagnosed everyday , there is a need for this community to have an active voice and recognition.
It is happening in all age groups from child to elderly

Osteonecrosis, also known as Avascular necrosis (AVN), aseptic necrosis or ischemic bone necrosis, is a disease resulting in the death of bone cells. If the process involves the bones near a joint, it often leads to collapse of the joint surface and subsequent debilitating often crippling arthritis due to an irregular joint surface.

Although it can happen in any bone, osteonecrosis most commonly affects the ends (epiphysis) of long bones such as the femur (thigh bone). Commonly involved bones are the upper femur (ball part of the hip socket) the lower femur (a part of the knee joint), the upper humerus (upper arm bone involving the shoulder joint), and the bones of ankle joint. The disease may affect just one bone, more than one bone at the same time, or more than one bone at different times.
Osteonecrosis can cause severe pain and disability. Early diagnosis and early treatment may improve the outcome.
Osteonecrosis may result from use of glucocorticoid (sometimes called corticosteroid) medicine or from drinking too much alcohol but there are many causes and also some that are unknown.
Though osteonecrosis can occur in almost any bone of the body, the hips, knees,ankle and shoulders are the most common sites affected.
The cause and treatment for osteonecrosis of the jaw differs from that for osteonecrosis found elsewhere.

The most common causes of osteonecrosis are:

Serious trauma to bone or joint (injury), which interrupts a bone’s blood supply
Corticosteroid medications (such as prednisone, cortisone or methylprednisolone), mainly when a high dose is used for a prolonged period of time
Excess alcohol consumption
Systemic lupus erythematosus

Other risk factors for osteonecrosis include:
Decompression disease (also called the “Bends” that can occur with scuba diving)
Blood disorders such as sickle cell anemia, antiphospholipid antibody syndrome (APS) and lupus anticoagulant, factor v leiden, and others
HIV infection (the virus that causes AIDS)
Radiation and Chemotherapy
Bisphosphonates, which may be linked to osteonecrosis of the jaw
Organ transplants

Osteonecrosis is not life-threatening, but it is debilitating and hurts our quality of life. Although it isn’t well-known and its exact cause is unknown, AVN-ON affects 10,000-to-20,000 Americans annually. Between 30 and 60 percent of patients will experience AVN-ON bi-laterally, which means both sides so if one hip or knee has it most likely so will the other.

Please help those of us that suffer from this condition by creating more research , funding studies and allowing us the recognition, as only through education, research and awareness can we get better treatment options, earlier diagnosis and hopefully prevention.

Thank You

Deb

Maintaining Angiogenesis Can Prevent Glucocorticoid Induced Osteonecrosis

Angiogenesis is a key component of bone repair. … Angiogenesis is regulated by a variety of growth factors, notably vascular endothelial growth factor (VEGF), which are produced by inflammatory cells and stromal cells to induce blood vessel in-growth.

Wouldn’t it be great if there wa a way many could keep their blood vessels healthy and avoid or lower risk of developing Osteonecrosis?

Research and links below discuss just that.

#angiogenesis and bone repair in steroid-induced osteonecrosis

#Osteonecrosis #AvascularNecrosis

Links

Angiogenesis in Bone Regeneration What It Is

Angiogenesis and Bone Repair For Osteonecrosis Info and Links

Maintaining Angiogenesis Prevents Glucocorticoid Induced Osteonecrosis

Genetic association of angiogenesis- and hypoxia-related gene polymorphisms with osteonecrosis of the femoral head

How people can develop Osteonecrosis in Jaw.

Link below.

Osteonecrosis of the Jaw and Angiogenesis inhibitors: A Revival of a Rare but Serous Side Effect.

Photo credit and website listed below.

Bringing new life to damaged bone: The importance of angiogenesis in bone repair and regeneration photo linked to this site