Tag: Patient Leader

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

 

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More links are in my blog

 

Deborah Andio

Patient Leader Blogger Empowerer