Archive for November, 2016

Charcot Foundation Moves Forward

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It is nearly time to Post my blog and prepare for Thanksgiving dinner. I seem to have too many things on my plate, but I really don’t mind. My real problem is giving everything the appropriate amount to time. Our first major blessing is the birth of our first grandchild, Spencer. He is a joy I never thought I would experience.
His awesome parents spoil him rotten and that’s OK.

I am still looking for some strong board members to help guide Our foundation (CAEF) to new heights. This has been a wonderful year. We took part in our local Casino’s Mardi Gras celebration. We were one of twenty selected to build a float on a child’s little red wagon representing the foundation using a Mardi Gras theme and colors.

2016 Mardi Gras Float

2016 Mardi Gras Float

Though we didn’t win one of the top three prizes, we were selected by the Queen of the parade and received a monetary award from her through the casino.
Close up of butterflies

Close up of butterflies

We also took part in the nation wide Great Give in May and am proud to say we have some wonderful, caring donors who helped us meet our goals. Our thanks go out to all of you who donated on May 3rd & 4th. We have been able to make our foundation more efficient and hopefully more effective.
Kick off gathering for Great Give event

Kick off gathering for Great Give event

We have attended some seminars and done several speaking engagements.

We were selected to take part in the Casino’s Mardi Gras event again this coming year. We have been in communication with Temple University concerning Charcot Foot Deformity curriculum and have created brochure concerning Charcot Foot Amputation and it’s effect on one of our board members. This should be available in January. We have also been gathering Charcot stories for a book that will help people deal with and understand what a Charcot patient could experience. If you have a experience Charcot Foot Deformity we would love to hear from you and possibly include your story in the book.

Again thanks to all of you who support CAEF with your TIME, TALENT, AND TREASURE. You are awesome. It is amazing what has happened since this website began in 2010. May your contributions come back to you 10 fold. Happy Thanksgiving!
Please send and continue sending your donations to:
Charcot Awareness Education Foundation
P. O. Box 3902
Silverdale, WA 98383

This weeks article was contributed by Founder Annita Shaw
Brought to you by Charcot Awareness Education Foundation

Over 25 Diseases Make Charcot Worse

I often am asked,” What makes Charcot worse?” There are at least 24 diseases that cause Charcot to become worse and most recently I came across a gentleman that told me he was diagnosed with Restless Leg Syndrome and has Charcot.

I asked a specialist on steroids why Corticosteriod use was number two on my list of things that make Charcot worse? He said, “because it depletes calcium in ones system, thus weakening the bones”. My husband has COPD and Corticosteroids are used a lot with this condition.

Diabetes heads the list that causes Charcot to become worse. I often spend much of my time with it as I am also a diabetic. Now that the Diabetic association calls the foot deformity problem “Diabetic (Charcot) Foot.” This is quite a change after talking with them the first time when they asked me, “Who manufactured Charcot”.

The following list of diseases by Ali Nawaz Khan MBBS Riyadh, Saudi Arabia appeared in an article in e-medicine on Feb. 21, 2007. I added and Corticosteroid use and Restless Leg Syndrome.

  • Diabetes
  • Use of corticosteroids
  • Alcoholism
  • Trauma
  • Infection
  • Amyloidosis
  • Prenicious anemia
  • Syphilis
  • Syringomyelia
  • Spina bifida
  • Myelomeningocele
  • Leprosy
  • Multiple scierosis
  • Congenital vascular disease
  • Charcot-Marie-Tooth disease
  • Cord compression
  • Asymbolia
  • Connective disorders, such as rehumatoid arthritis and sclerodema
  • Ehlers-Danlos syndrome
  • Raynaud disease
  • Adrenal hypercorticism
  • Thalidomide embryopathy (congenital arthropathy in offspring of exposed mothers)
  • Paraneoplastic sensory neuropathy
  • Cauda equina lipoma
  • Restless Leg sSyndrome
  • Since diabetes heads the list, diabetics need to be aware that this article says15% of the diabetic population has Charcot foot and a 2004 University of Washington study states that 1/600-700 diabetics with diabetes mellitus neuropathy has Charcot Foot. Layolia University now says 4 million diabetics in the US have Charcot and will lose their feet to amputation because they will be misdiagnosed or not diagnosed in time to save their feet. A retired Diabetic nurse educator told me, “anyone with peripheral neuropathy long term, 10 years or more will have Charcot Foot Deformity. Their care, observation skills, and their willingness to seek Knowledgeable medical help, will determine whether or not they will be an amputee.”

    Charcot is, apparently, difficult to diagnose and is often miss diagnosed as arthritis. One needs to find a Charcot knowledgeable professional. A Podiatrist DPM, or a foot and ankle specialist (surgeon) DPM, FACFAS who is able to diagnose correctly.

    Since neuropathy is a loss of sensation, one is unable to detect pain or its source. A doctor once told me a patient came into her office unable to remove his shoe and couldn’t understand why. When she looked at the bottom of the shoe she found a nail. It had gone through the shoe and well into his foot. It was removed and the shoe taken off to reveal a traumatic situation. Because of Neuropathy much goes undetected that could save the foot. Pain is a warning sign, but those with neuropathy don’t get the message.

    If you don’t have someone to help you check your feet, place a mirror on the floor that can be used to check your feet daily. Also, avoid going bare foot.

    Message by the Founder Annita Shaw

    Brought toby Charcot Awareness Education Foundation

Diabetic (Charcot) Foot

It is only recently that I have read articles from the Diabetic association that refers to Diabetic (Charcot) Foot. My concern for anyone that has Charcot is the fact that if they aren’t aware an amputation will be in their future, but this can be avoided. The person must be very aware of the condition of their foot, its health, if it is changing shape in any way. Can they feel something if they step on it? No, this is neuropathy and many with neuropathy don’t realize they can’t feel. Also one foot is usually warmer to the touch than the other.

Lack of awareness and misdiagnosis are the two main reasons Charcot goes untreated.

Without treatment, Charcot can take away many of the basic functions of life: the ability to care for one’s self and family, hold a job and earn a living, exercise, and even live without pain.

Sadly, many people in general, and medical professionals will say this is not a life threatening disease. Yet, only within the past two years, one gentleman died because he underwent Charcot surgery more than once. Why? The doctors were not adequately prepared or trained to conduct this complicated surgery. They didn’t adequately prepare the patient to care for himself once home. Another was a woman who had a Charccot amputation, because of depression wouldn’t leave her home, spent much of her time on the couch, wouldn’t get dressed or answer the phone or door. She was found dead on the couch. Most recently a 60 year old man went to the hospital, had his foot amputated and lived only a few days after surgery. Yet had Charcot been discovered at an early stage, surgery could have been performed and recovery could have been only six weeks. They could have all walked again and lead a normal productive life with family and friends.

Hardware in Annita's right foot

Hardware in Annita’s right foot

How can I say this? I have Charcot and was fortunate to have had a young very knowledgeable surgeon who well prepared me for Charcot surgery. My right foot was in the last stage prior to amputation. He was able to save my foot from amputation. This was nearly a year of recovery much of it non weight bearing and in a wheel chair. My left foot also had Charcot but was in the very early stages. He preformed minor surgery (in my opinion) and recovery was six weeks and I was walking. Most who know me find it hard to believe as I had so much difficulty walking and now walk quite normally.

Message from Annita Shaw Founder

Brought to you by Charcot Awareness Education Foundation

Challenge: Communicating Charcot Foot Facts

I am sitting here feeling really frustrated as over the years I have read many articles about diabetes, yet they never mention Charcot foot deformity. I finally found a newspaper reporter in Nebraska that was interested in my story. While there, I contacted her. I was excited about her interest. We met and visited, getting to know each other. She interviewed me with the understanding, I thought, that the focus would be on Bonnie, a Charcot amputee whose story has been on this website and lives in the area. We then scheduled an interview with Bonnie at her home.

Bonnie's New CROW Boot

Bonnie’s New CROW Boot

I wanted to film the interview, but was discouraged from doing so. I wanted you, my readers, to hear and see what she had to say. The staff reporter had access to Bonnie’s story, as well as mine from the website, so I didn’t question the fact she asked only a few questions to clarify some points and spent much of her time telling us about herself.

After she left, we were concerned about what she was going to write. But figured at least we had gotten some coverage for the Charcot Awareness Education Foundation and this devastating disease. Only to learn when it came out, the headline read: Foundation Brings Awareness to Uncommon Diabetic Disease. This was up setting as there are 24 plus diseases that make Charcot worse. Diabetes only heads the list.

Charcot Awareness Education Foundation has always wanted to prevent amputation. I was fortunate in that my Charcot was diagnosed soon enough that I could undergo surgery and save my feet from amputation. Bonnie, however, wasn’t so fortunate. Recently, I learned peripheral neuropathy ( the inability to feel or sense…temperature, pain or trauma) causes Diabetic (Charcot) Foot, impacting over 10 million diabetics in the USA. Have you or do you know of someone who has diabetes and has had an amputation of a toe, a fore foot, or BK Cut? There is a really good chance they had and were not diagnosed correctly and could have avoided an amputation.

Uncommon? Diabetic Disease? I don’t think so. The headline is misleading. One study says there are 16,000,000 million diabetics another 25,000,000 diabetics in the US. That comes to 25% or 6.75% of the diabetic population has Charcot, so I believe that is a serious problem and not that uncommon. Also, Diabetes does NOT cause Charcot. It makes it worse. Not to mention all people with the 24 other diseases and Corticosteroid use that affect Charcot.

There were many problems with the write up, but I will only deal with a couple more in this article. The reporter contacted a local podiatrist who has avoided me for several years. He stated”…the leg is red hot and swollen.” Neither Bonnie, nor I, nor any other person with Charcot that I have spoken with has had a red hot swollen leg, foot maybe. these can be warning signs but not all instances are the same.

Hardware in Annita's right foot

Hardware in Annita’s right foot

Hardware in Annita’s right foot[/caption]Foot, yes.

It is hard enough to talk about Charcot Foot deformity with people, but to find the medical profession is not fully prepared to deal with it is something else. Because of this website and our brochure we have been in contact with many people. We have had millions visitors to date. We appreciate the emails, letters and phone calls along with donations that thank us for being here. Most of all, I personally, appreciate all those who have and are keeping us informed about their personal experiences with Charcot Foot, both sad and positive. Hopefully, in 2017, I will be able to bring you some new stories as I have several who are now willing to share their experiences with you.

Annita’s message concerning Diabetic Charcot Foot

Brought to you by Charcot Awareness Education Foundation