Archive for February, 2015

More Diabetics, Charcot Foot Becomes Common

After the Fat Tuesday Parade, I was thinking about what the man walking on stilts told me after visiting about our Charcot Awareness float and avoiding amputation. He told me of a diabetic who was leaving the hospital after having two toes amputated. He asked him what he was going to do. He replied that he was going to go eat a large elephant ear. The stilt walker was shocked. I wasn’t as I have heard many stories about diabetics who abuse their bodies and don’t take care of themselves thus accepting what happens to them such as a loss of a toe, foot or leg. Outward…No big deal, but I doubt that is the inner thought.

After doing some research, we found an article ACFAS wrote in 10/23/07 ironically shortly after I had my Charcot Surgery. I would like to share this with you. I will only use first names and will use pictures from my own surgery where fitting.

At first Kim didn’t worry about the swelling in her foot. After all, it was pulling double- duty while her other foot recovered from surgery.

Toes being deformed by Charcot. Notice how they have curved like claws

Toes being deformed by Charcot. Notice how they have curved like claws

Swelling of the toes and their deformation[/caption] “I have a high threshold for pain,” she says. “It hurts to walk on it, but I didn’t think it was serious.”

Just a year earlier, doctors diagnosed the 48-year old mother of four with diabetes. The recent surgery on her right foot
corrected a bunion to prevent reoccurring diabetic ulcers.

As her bunion recovery moved forward, her left foot moved outwards. Her ankle bent inwards. The foot grew so swollen none
of her shoes fit. The skin was warm and red. She
started to worry. During a follow-up visit with her foot and ankle surgeon, she spoke up. Her doctor took one look as said,
”We have a problem.”

(Unfortunately few patients or care providers know about this limb-threating foot condition, or its warning signs. This is what Charcot Awareness Education Foundation hopes to change. We are presently putting a team of professionals together to develop curriculum and training to educate everyone through a comprehensive curriculum about this devastating disease.)

Notice the swelling of the right foot

Notice the swelling of the right foot

The difference in size due to the swelling of the Charcot Foot[/caption]Kim was diagnosed with a rare diabetic complication called Charcot Foot. It is estimated to affect less than one percent of people with diabetes. Now doctors with the American College of Foot and Ankle Surgeons (ACFAS) say Charcot foot’s prevalence appears to be growing as more Americans get Diabetes. (Their latest is 30 million Diabetics in the USA and 1/3 of them have Charcot and aren’t being diagnosed.) Some worry that few patients –or their diabetic care providers—seem to know about this complication or its warning signs.

Charcot Foot is a sudden softening on the foot’s bones caused by severe neuropathy, or nerve damage, a common diabetic foot complication. It can trigger an avalanche of problems, including joint loss, fractures, collapse of the arch, massive deformity, ulcers amputation and even death. As the disorder progresses, the bottom of the foot can become convex, bulging like the hull of a ship. Since most people with Charcot cannot feel pain in their lower extreme ities they continue walking on the foot, causing further injury.

Charcot cannot be reversed, but its destructive effects can be stopped if the complication is detected early.

This weeks article was contributed Founder Annita Shaw

Brought to you by Charcot Awareness Education Foundation

Non Profit Event: Fat Tuesday

In November of 2014 I put Charcot Awareness Education Foundation in for a chance to create a float for the Suquamish Clearwater Casino Resort Fat Tuesday event. Our name was drawn and we began the process of creating a float just before Christmas. Max, my husband and Justin, our son, assisted in the creation. We were very pleased with the results. January 17 we took the float to Clerwater where it was on display for 30 days.

Applying Papier Mache making the dragon

Applying Papier Mache making the dragon

Applying Papier
Making the dragon's teeth

Making the dragon’s teeth

Mache making the dragon[/caption]We put in about 100 hours to create this creature. Many asked why I chose a dragon to represent Charcot. Since this is a celebration I found it hard to celebrate Charcot since it is a bone deteration disease. Since the very popular Triple Dragon slot machine is a favorite there I decided to recreate something similar. The message I used was Charcot Foot Deformity (Diabetic?) Avoid Amputation. This seemed to get a lot of peoples attention.

We were out there several times. I found two people looking at the float and one of the

Preparing baee of float to mount the dragon

Preparing baee of float to mount the dragon

ladys had her phone out. I asked them if they liked my dragon. They said yes, but they had never heard of Charcot Foot Deformity and were looking it up when I arrived. This lead to a great discussion, bringing awareness which is what I really wanted to happen.

Fat Tuesday, February 17th, was a wonderful even. There were 20 floats which had a parade route around the casino. We handed out brochures and candy coins to help more people learn about our foundation. Of course they were judged and the top float got $3000 for their charity. We didn’t win but everyone that didn’t win received $500 for entering . It was definitely a wonderful event for us as we had an opportunity to let the community know more about the foundation.

Just before the start of the Fat Tuesday Parade float line-up

Just before the start of the Fat Tuesday Parade float line-up


I was surprised when we went to my husbands COPD meeting to have people tell us they were sorry we didn’t win, but they voted for us. They wished us well and were pleased we were letting the public know that if they have diabetes and Charcot that they don’t have to be an amputee that there is help.
Waiting in staging area for parade to start

Waiting in staging area for parade to start


Many were surprised we are the only CAEF in the entire world. Many things happened at the Fat Tuesday event I reconnected with a lady who was in the water aerobics class when I first was diagnosed with Charcot. She is an awesome lady and was a nurse and encouraged me a great deal. She was pleased to hear how far we have come with the foundation. When I told her of our intent to work in curriculum to educate and train people, she was very interested as she was involved with diabetes. She may help me develop some of the curriculum. We are keeping our fingers crossed hoping she will be a part of the team.

This is a really exciting time for us and hopefully a really positive time for those who have Charcot Foot Deformity.

This weeks article was contributed Founder Annita Shaw

Brought to you by Charcot Awareness Education Foundation

A Support Group. . . The Best Medicine

Untitled-1Cards, letters, flowers, gifts and phone calls, as well as, visits really made a difference in my recovery and improvement. This is really emotional for me as the out pouring of love, caring and help was overwhelming. It was always wonderful to see a friend appear at the studio where I was recuperating. Just having them come was enough, but they usually brought someone with them, or they brought food, flowers, cards and gifts.

I was usually in good spirits, just not able to move as my leg was elevated and iced for 20 minutes of each hour. I’ve never been great company for myself. I love to chat and everyone patiently listened to my story. I never ever wanted to be a person that talked about my ailments as I thought older people should have other things to talk about beside their health. I’ve kept that attitude, but only as part of the picture.

Because of our lawyer and the fact that we found very little information about Charcot Foot and knowing there were many that have this disease that aren’t diagnosed, there was a need to talk about it. I found my teaching skills were still needed and that there was a definite interest and need to inform. I ended up contacting our local newspaper to find someone in the medical section I could talk to concerning Charcot Foot. Instead the editor ask questions and decided to have a reporter come to my studio and do an article about me and the disease Charcot. This was really enlightening for me. P9080002

The phone was a life line, as calls came in from every where, and I was able to call out. We, my friends and I, talked about everything. This really helped me keep positive and informed about the happenings in their lives. I didn’t think so much about my inability to walk and go back to the pool for water aerobics. This was a big part of my social world. This group really went above and beyond to help us. They loaned us the wheel chair (I used it nearly three years) and the potty chair another necessity.

Max even took me to the Pool just to say hello to everyone. That boosted my morale as we talked, laughed and teased. I really missed the water and was anxious to return.

Through all of this, the power of prayer was evident. My home church in aP3130005 very small rural town in Nebraska put us on their prayer list. Tears came to my eyes when I told about looking out of my hospital window early one morning. Pink clouds were surrounding Mt. Rainier and whispy pink clouds floated above. A good friend of ours in Texas told me her mother, 77, had prayed in the Russian Orthodox Church in Moscow, Russia for my healing for hours. She sent me a sign of her prayers. It would be in “pink”. She was a very precious lady to me. Her name was Lena. My support group will never know what a very truly important part they played in my healing and recovery. Definitely my best medicine!

Happy valentines Day

This weeks article was contributed Founder Annita Shaw

Brought to you by Charcot Awareness Education Foundation

Who Should Identify Those With Charcot Foot?

For the last three days I have had a miserable sore throat. In fact it has kept me awake much of the night. I thought I was better when I went to bed only to wake nearly every 20 minutes. I finally resorted to my mom’s old hot water with salt to gargle with. Unfortunately, I couldn’t even gargle well it hurt so badly. Since I was scheduled to go in for my blood draw to check my A1C, I decided to see a doctor about this condition. I saw a new doctor, one who was very nice and said this was going around. After a check. He said my lungs were clear and the swabs showed no evidence of strep. Now, I was beginning to think this was all in my head. Well, I guess it was in my throat. I think he felt sorry for me and gave me a prescription for some lollipops that had a numbing agent that they give children who have their tonsils out. They work fairly well, but I like the salt water gargle better.

Since this doctor was new to me I decided to quiz him about Charcot. I started out by showing him the press release from the American College of Foot and Ankle Surgeons (ACFAS) and that I was quoted in the article. He said he didn’t know about Charcot foot but he did know Diabetic Foot. I then showed him our brochure and he was quite interested in it. We spoke of the fact that if he could diagnosis a diabetic with Charcot at his level there would be many fewer amputations. He then told me to bring my brochures into the office next week and he would have them put in the waiting room. He was the first doctor in quite some time that was interested in making a difference. He really gave me hope.

I met with Dr. Schade yesterday. We did some brainstorming and decided on some areas to concentrate on for curriculum development of Charcot Foot. Since Diabetes is the main disease that makes Charcot Foot worse, I believe there are two categories. I won’t define them at this time, as I really want to be very clear, however, Diabetes makes the situation worse no matter how you look at it. ACFAS has identified 1/3 Of 30 million diabetics who have Charcot. We need to help them avoid amputation. My surgery was a seven day stay in the hospital, a six month non weight bearing recovery with several months of care taken to get back to a fairly normal routine. Yet my left foot only required day surgery and a six week recovery and the foot is very normal.

My question now is, “Who should know how to identify those with Charcot Foot?” The person who told me I had a very serious foot problem was the person who fitted me with orthotics in my shoes. As I look back now the doctor that determined I was a diabetic should have been very aware. However, he seemed very disinterested in my feet. Yes, he did the fine monofilament test for neuropathy, but felt it was not properly administered as I could easily “cheat” as I was often able to watch him test my feet. It has been brought to my attention that other tests, x-rays or even an MRI can help in a diagnosis. This is an added expense so other is not done. After a short time, none of my primary care doctors even asked me to take off my shoes during and exam, knowing full well I was diabetic and they should check my feet.

Recently, I was visiting with a man who worked in a nursing home. He said many of their patients were diabetic, but he had never heard of Charcot. Yet, he knew several had really bad looking feet. Those working with prosthesis do know about Charcot as they usually work with them after the amputation. Too late to help them save their feet. Emergency room people should be well educated about Charcot as they often deal with Traumas that can lead to Charcot Foot. Others in health care, social service agencies, and home health care. Of course the general public should be educated the at risk person and of course the patient who is diagnosed with diabetes or Charcot. They need to know the risks and options. I shouldn’t have to mentions this but, people in the medical field, doctors, nurses, med students and of course specialists dealing with feet. Unfortunately, many never see a foot specialist until it is too late.

If you have others you feel need to be aware of Charcot that I haven’t touched on Please feel free to let us know. I want to help everyone we can avoid amputation

Annita Shaw – Founder

Brought to you by Charcot Awareness Education Foundation