To Our Dear Readers

 

Often being diagnosed with a rare disease is not easy , it can often  leave you feeling alienated  exhausted and at times discouraged. We often end up having more questions than answers.

 

There also is very little to no public attention when you have a rare disease/disorder such as fun runs, fundraisers ,even research money  is limited when it comes to having a rare disease.

 

Far too often doctors may not be as educated  or skilled on a certain a rare medical condition which often causes patients to be misdiagnosed.

 

Those suffering often go months to years without a proper diagnosis.

 

Then there is the treatment options which appear just as limited.

 

There are about 7,000 different types of rare diseases with new discoveries every day. In the United States alone there have been approximately 25-30 million people given the diagnosis of an uncommon medical condition.

 

But we cannot give up. We must keep going, we must live mindfully and even in pain we must try to live our best life.

 

Avascular Necrosis/Osteonecrosis is one of those rare diseases and today I am happy to introduce you to the creator of it’s just a bad day not a bad life.

 

 

But before I do, I want to tell you a bit about her.

 

She  is the VP of WEGO Health patient network as well as a Patient Empowerer, Certified Holistic Health Coach, Yoga Instructor, Speaker and Patient Leader Blogger who is thriving with psoriatic arthritis and avascular necrosis of the femur and has battled melanoma, complex regional pain syndrome, depression, and anxiety.

 

 

Please welcome Julie Croner

 

She is using her personal mantra ‘It’s just a bad day, not a bad life’, she started itsjustabadday.com, which has been named one of the top 5 Psoriatic Arthritis blogs by EveryDay Health, top 7 Psoriasis blogs by HealthLine, top 40 Arthritis blogs by Feedspot and has been highlighted by The Mighty, WedMD, The National Psoriasis Foundation, and many other online sources.

 

 

Staying busy is a way of life for Julie. Some of her accomplishments and activities include:

 

 

Vice President of the Patient Leader Network for WEGO Health, 2016 Standford MedX Ignite Talk and Oral Presenter, 2014 Stanford Medicine X ePatient Scholar, Psocial Ambassador for the National Psoriasis Foundation, member of the Advocacy and Mission Committee for Arthritis Foundation, WEGO Health

 

 

Best In Show: Twitter in the 2015 Health Activist Awards, Psoriasis Social Media Ambassador and Health Guide for HealthCentral, blogger for PsoStrong.com, contributor to Everyday Health and Yoga Instructor.

 

 

 

Julie is an army wife and new mama. When she’s not working, Julie can be found jamming out to Celine Dion, taking a yoga class, traveling, cooking, geeking out over health-related things or enjoying life in Pittsburgh, PA.

 

You can find Julie at

 

Blog: Itsjustabadday.com

 

Twitter: twitter.com/justagoodlife

 

Facebook: Facebook.com/itsjustabaddaynotlife Instagram: Instagram.com/itsjustabaddaynotlife LinkedIn: http://www.linkedin.com/in/juliecerrone

 

Blog Email: justabaddaynotlife@gmail.com

 

 

Please welcome Julie Cerrone

 

 

 

So Julie : How long have you had Avascular Necrosis -Osteonecrosis?Where do you have avn-on?

 

 

I was diagnosed with AVN in my left femur bone in December of 2012.

 

 

 

Is your Avascular necrosis in more than one joint or bone?

 

 

It was in just one bone, but I had 2 places within the bone. A smaller section and then a larger section that was crumbling due to me putting weight on my leg.

 

 

 

How did you feel when you were diagnosed?

 

 

Up to the day I was diagnosed I had been continuously going to my doctor complaining I was in pain. I had 2 back to back surgeries (my 4th and 5th knee surgeries overall), had been in therapy, was on crutches and was in so much pain I had been unable to work for the previous 6 months. He kept saying that there wasn’t anything wrong – but I pushed for every test under the sun.

 

 

I’ll always remember December 17th, 2012 and the look on my doctor’s face when he came into my exam room. He said you have AVN. I know what it is, I’ve seen it before, but I don’t know really how to best treat it and I don’t know where to send you.

 

 

 

I’m a pretty positive person – but hearing that from someone I had trusted for years as my orthopedic surgeon really hit me. I literally went home, laid on the couch and cried for the rest of the night. I had NO idea bone could die. And for my doctor to tell me he had no idea what to do . . . . that was hard.

 

 

Did they say what may have been the cause of your avn-on?

 

 

So obviously no one can pinpoint it exactly, but this is what I have deduced from reflecting on it for the past 7 years.

 

 

In February of 2012, I started having knee problems. I had had knee problems my whole life, so it was kinda like “here we go again” thing in the back of my mind.

 

As months went on, it wasn’t getting any better – in fact it was getting worse. I went to my orthopedic and in June I had surgery. I ended up going back into the OR in September because I was still in so much pain.

 

 

Looking back, it’s very clear to me now that there wasn’t anything surgery could have fixed- I was having a psoriatic arthritis flare. In middle school a doctor had suggested that I had PsA but I never took it seriously because 1) I had no idea what it was 2) I was young and thought there’s no way I had arthritis.

 

 

December 26th, 2012 (right after I was dx with AVN) I ended up in the hospital because I was in so much pain I couldn’t stop shaking. That’s when I was officially dx with psoriatic arthritis.

 

 

A year after getting diagnosed with AVN I found out that I have prothrombin thrombophilia which is a blood clotting mutation. Basically, I think that the mutation predisposed me to be susceptible to AVN, and then coupled with the back to back unneeded surgeries and a psoriatic arthritis flare = the perfect storm.

 

 

Did you ever hear of avn-on before your diagnosis?

 

 

Nope. I had never heard of it. And honestly, I didn’t even know your bone could die!

 

What are some of the treatment options have you tried? Were any helpful?

 

 

So I was on crutches for 3.5 years. The longest ‘treatment’ I did was to stay off of it and give my knee a chance to recover. I also took pain killers around the clock to deal with the pain. I then subsequently did 2 things that ultimately got my pain under control and helped me get my life back together.

 

 

1) I took high doses of blood thinner injections to get my blood flowing to the necrosed areas of my bone. This actually worked wonders and it revived the smaller AVN part of my bone. Today on MRIs you can’t even see it!

 

 

2) I had a Regenexx stem cell procedure done. This was AMAZING. I blogged the entire journey: http://www.itsjustabadday.com/regenexx-avn-procedure/

 

 

 

I’m 4.5 years out from the procedure and feel amazing. I haven’t had ANY pain, ANY issues or ANY concerns. The last MRI I had was at a year out and my bone had regenerated 60%. The way it had regenerated it encapsulated the dead part that was crumbling and strengthened the bone. I’m able to live life, function, walk, run – do anything I want without any worry of AVN.

 

 

Can you tell me do you work or are you unable to work?

 

 

I was on disability for almost 4 years. I’m back to work full-time now. I’m even a yoga instructor!

 

 

How many doctors have or did you see before getting diagnosed?

 

 

 

I was only going to my 1 orthopedic doctor and it took me 6 months to get a proper diagnosis. But in order to TREAT my AVN, I lost track at 29 providers.

 

 

You know who ended up helping me? PATIENTS. Patients online were my saving grace and the reason I found out about the blood thinner injections and the stem cell procedure.

 

 

 

What would you tell someone who has been newly diagnosed with avn-on?

 

 

 

Stop what you’re doing, go to the Regenexx website and lookup an office near you. They’re the ones who have been doing this the longest, have the most research and help AVN patients all the time. I’m living testimony that this can work. But don’t just take my word for it – I’ve connected with hundreds of other patients who have received benefits fro the Regenexx stem cell procedure.

 

 

But on that note, be weary of stem cell procedures. I personally endorse the Regenexx procedure because of their process and their standard of quality. Others do not do it the same way they do it (even Mayo Clinic or Cleveland Clinic). Also- do not get stem cell injections that are not your own. If you’re getting anything other than your own mesenchymal stem cells you’re wasting your money.

 

 

 

And for those who are worried about the financial aspect of the stem cell procedure, I say this to you. Yes, it’s an investment. But without your health- what do you have? I was on disability, didn’t have a ton of money in the bank and still found a way to get it done. I’m not any more entitled than anyone else out there. If there’s a will, there’s a way.

 

 

Most people look at it from the upfront cost – but you don’t consider this…

 

 

To get a joint replacement, on average, in most markets it costs around $40k. (sure, you don’t pay all of that, but you’re paying your insurance costs). Then you’ll have follow up doctor visit, etc.

 

Then you have to go to therapy – for MONTHS.

 

With a joint replacement, you’ll be off work, you’ll be unable to really function properly for a good amount of time.

 

And to be blunt, a lot of people have problems with joint replacements and end up spending more time and money on fixes and follow-ups.

 

Oh- and also, depending on your age – you’ll need to get another one because they don’t last very long. Especially if you live an active life.

 

 

People always think that having insurance cover a core decompression or a joint replacement is the better way to go. I BEG you to think of it not in those terms. Think of YOUR LIFE. The quality of life you want to have.

 

 

By having a stem cell procedure, I not only still have my own joint, but it’s healthy and I don’t have to worry about having to go through it all again in the future.

 

 

 

 Name something positive that has been a result of getting avn-on?

 

 

I’ve had amazing experiences since being diagnosed with AVN. I had the opportunity to share my story of how patients were the ones who got me back to walking and regrew my femur bone at Stanford MedX: http://www.itsjustabadday.com/2017/03/09/medx-ignite-talk-replay/ (If you scroll to the bottom of the post you can see my Ignite talk)

 

 

And I was invited by the FDA to share my story on stem cells at a hearing: http://www.itsjustabadday.com/2016/09/28/fda-stem-cell-hearing/ (If you scroll down to the bottom of this post you can see my testimony)

 

 

But honestly, the most positive thing that has resulted from my diagnosis is getting to connect with patients all over the world, on a weekly basis, and helping them know they’re not alone. I try to pass on my own advice, my own journey and my own thoughts to help them feel a little less alone and to have a bit more knowledge than I did when I was in their shoes. It really helps me to know that I didn’t go through this for nothing. I went through this to help others and to really find my passion in life.

 

 

 

Thank you so much Julie not only for this interview but for being a great inspiration to so many and educating others while raising awareness on this rare disease. May you have continued success in your advocacy and all that you do and wishing you continued wellness.

 

 

To follow Julie on social media her links are listed below.

 

Blog: Itsjustabadday.com

Twitter: twitter.com/justagoodlife

Facebook: Facebook.com/itsjustabaddaynotlife Instagram: Instagram.com/itsjustabaddaynotlife LinkedIn: http://www.linkedin.com/in/juliecerrone

Blog Email: justabaddaynotlife@gmail.com

 

 

Please help raise awareness by sharing this blog post in the hopes it reaches someone who may benefit from the information provided.

 

 

 

*If you are interested in sharing your Avascular Necrosis -Osteonecrosis story or Group  in an interview please email me at.

 

If you know of someone or if you are someone who suffers from AVN-ON and you need a great support group

 

Click on the link to find this Facebook group – Avascular Necrosis/Osteonecrosis Support, Int’l.

 https://www.facebook.com/groups/DeadBoneDiseaseAVN/?ref=share

Also please like and subscribe to my blog and if you want to follow me you can find me at the links below.

 

Thank you again Julie and

 Here is wishing everyone a pain free day.

 

 

To learn more about me check out

Deborah Andio links below please like follow and share.

Thank you God Bless You.

 

Click on the link to visit and subscribe to my website :

www. ChronicallyGratefulDebla.com

 

Instagram Personal :

http://www.instagram.com/deborah_andio

 

Instagram Awareness Chronically Grateful Me

http://www.instagram.com/chronicallygratefulme

 

Twitter:

 

 

More links are in my blog

 

Deborah Andio

Patient Leader Blogger Empowerer

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

Signs It May Be Time For Hip Replacement©

When you have tried everything an all non-surgical treatments stop relieving your chronic hip pain, or your pain reaches debilitating levels, hip replacement surgery may be the best option to relieve your discomfort, restore your mobility and improve your quality of life.

Hip pain due to Osteonecrosis is an increasing problem for many.

After time over-the-counter pain medications can lose their efficacy and chronic hip pain can quickly escalate often requiring prescription medications, physical therapy, and the use of canes or walkers to aid mobility.

If your pain is severe and debilitating, isn’t it time to do something about it.

Talk to your Doctor or Orthopedic because you don’t need to suffer and have a poor quality of life.

What Signs & Symptoms Indicate a Need for Hip Replacement Surgery?

Hip pain can have a number of causes, not all of which can be relieved by a hip joint replacement.

Among the listed causes of AVN are steroid use, trauma, hypertension, rheumatoid arthritis, and alcoholism, blood clot disorder, smoking, vasculitis Bisphosphonate use, Chemo or radiation or it could be idiopathic, meaning no cause can be determined. Certainly Napoli has had his share of wear and tear, being a catcher.

For instance, constant or long-lasting stiffness in your hip joint can be a sign of rheumatoid arthritis while pain that centers in the buttocks region and radiates down the leg may be related to sciatica.

However, many cases of hip pain and discomfort are directly related to your hip joint.

Symptoms and signs that it may be time for hip replacement surgery include:

• Mobility issues, especially if your level of mobility progressively worsens

• Persistent or recurring pain, swelling or discomfort in your hip

• Hip pain that worsens during rainy weather

• Inability to sleep due to hip pain and discomfort

• A “grating” feeling in your hip joint

• Increasing difficulty in climbing stairs or getting in and out of cars, bathtubs, and chairs

• OTC medications no longer effectively manage your hip pain

If you have any or all of these symptoms, talk to an orthopedic surgeon about the possible need for hip replacement surgery.

How Is a Diagnosis Made?

To determine if you are a good candidate for hip replacement surgery, you will need a thorough examination by an experienced orthopedic surgeon. This examination will include:

• A complete medical history evaluation, including any previous injuries or illnesses that could be contributing to your pain

• A physical assessment to determine your range of motion, pain level and the strength of your affected hip

Your orthopedic surgeon may also order additional medical testing, including MRIs and X-rays. If your surgeon decides that the next step is hip replacement surgery, be sure to discuss any questions or concerns you have about the surgery or recovery from hip replacement surgery.

What Do You Need to Know About Hip Replacement Surgical Procedures?

Potential candidates for hip replacement surgery need to know that the surgery is a time-tested procedure that has been used successfully for more than four decades to relieve chronic hip pain and improve both flexibility and mobility. More than 300,000 Americans opt for hip replacement surgery each year to rid themselves of hip pain and improve their quality of life.

Total hip replacement surgery, or total hip arthroplasty, uses a ball and socket prosthetic joint to replace your damaged one. Special metals, such as cobalt-chromium and titanium, and polyethylene plastics, are used to make your prosthetic joints. These materials are safe for use inside the body and are extremely durable and long lasting.

The procedure for your total hip replacement surgery will most likely include the following steps:

1 Separating your femur from your hip socket

2 Removing the damaged ball from the femur

3 Removing your damaged bone and cartilage

4 Inserting a metal shell into your pelvic bone socket and using bone grafting material to secure it

5 Completing the artificial socket by adding the plastic liner

6 Preparing your femur to receive the metal implant

7 Placing the metal implant into the hollowed end of your femur

8 Attaching a metal ball component to the stem

Hip replacement surgery is a very effective procedure, and most patients experience a dramatic reduction in pain and improvements in their mobility and stamina. With the proper recovery procedures and physical therapy, you should be able to enjoy walking, swimming, biking and other low-impact activities without impediment.

 

If you can no longer bare the pain or have problems walking talk to your ortho about your options.

 

Good luck

We’re praying for you

Text ©Debla2014

 

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