Archive for November, 2014

Thanksgiving Message from CAEF (Charcot Awareness Education Foundation)

11/27/2014 Thanksgiving Message from CAEF (Charcot Awareness Education Foundation)

Yard view from Solarium

Yard view from Solarium

As I look out my solarium windows at the beautiful yellow, gold, purple and crimson leaves and feel the warm crackling fire in the fireplace, I realize the temperatures have dropped dramatically. The damp cold chills to the bone. Yet, this is the time of year one looks back and counts their blessings. Charcot Awareness Education Foundation is no different.

Being a relatively new foundation has been a challenge to be able to get our foot in the door to be recognized as a viable foundation. Though we were given 501 c (3) nonprofit status in late 2008, we didn’t establish the website until 2010. We have had over 1,600,000 visits from over 180 countries.

2014 has had its ups and downs emotionally. We have a grant writer that has been working very hard to help us get funding to move the foundation forward, such as, getting up dated technology. He did some research and learned Charcot Awareness Education Foundation is the only community based educational foundation of its type in the world. Even more reason to get the information out to those who may be affected by this devastating disease as this group of individuals aren’t getting the support or diagnosis they need.

Bonnie with CROW boot and Prothesis

Bonnie with CROW boot and Prothesis

The foundation wants to prevent amputation. Without treatment Charcot can take away many of the basic functions of life: the ability to care for ones self and family, hold a job and earn a living. Exercise and even live without pain or depression.

You, our donors and supporters, have made it possible to reach more individuals who have been able to get treatment and avoid amputation. A lady came up to me the other day and asked me if I was the “Charcot Lady”? I was surprised. She said I had given her and her husband a brochure over a year ago, because her husband’s feet hurt him. After several months with their podiatrist, who said he didn’t have Charcot, his feet were getting worse, They decided to go to a different clinic and a new podiatrist. The new podiatrist ran x-rays and said he had Charcot. After bracing and proper treatment he is walking fine. His podiatrist said if he hadn’t come in when he did he would now be an amputee.

Thank You, so, for making it possible to have brochures to hand out or send to interested and concerned people. Thanks for caring and wanting to be a part of preventing amputation. YOU DO MAKE A DIFFERENCE.

If you would like to be a part of the team, send your donation to:

CAEF Business Card

CAEF Business Card

Annita Shaw, Founder message
Brought to you by Charcot Awareness Education Foundation

Over 20 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 cortico steroids 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.”

the following list of diseases by Ali Nawaz Khan MBBS Riyadh, Saudi Arabia appeared in an article in emedicine on Feb. 21, 2007. I addedand corticosteroid use.

  • Diabetes
  • Use of cortico steroids
  • 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 syndrome

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 diagnosedin time to save their feet.

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 nueropathy is a loss of sensation in the foot, one is unable to detect painful sensations. 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

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. Another was a woman who had an 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 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 I had so much difficulty walking.

Message from Annita Shaw Founder

Brought to you by Charcot Awareness Education Foundation

Communicating Charcot Foot Facts is a Challenge

Communicating Charcot Foot Facts is a Challenge 11/06/2014

I am sitting here feeling really frustrated as over the year I have read many articles about diabetes, yet they don’t mention Charcot foot deformity. I finally found a newspaper reporter in Nebraska that was interested in my story. While back in Nebraska, I contacted her. I wanted her to interview Bonnie whose story has been on this website for quite some time now and lives in the area. 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 as she lives in the valley. 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, 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 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, Loyola University stated 4,000,000 diabetics in the USA are impacted by and will loose their feet to amputation.

Uncommon? Diabetic Disease? I don’t think so. The headline is missleading. 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 Cortico Steroid 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.

Hardware in Annita's right foot

Hardware in Annita’s right foot

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 over 1,500,000 visitors to date. We appreciate the emails 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 2015, 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