The Fire Inside Our Veins

Meet four inspiration children suffering with a rare disease

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Imagine being told by a doctor that your child has a horrific syndrome – one that you have never heard of and one that will leave your child feeling  like they have been set on fire and  then left with second-degree burns. Where do you, the parent, begin? Can you even try to envision this intensity of pain?   The dreadful news leaves you reeling as you start to experience feelings of overwhelming confusion, despair, unfamiliarity and anxiety.

While not all rare diseases are fatal, the suffering that accompanies a condition called Erythromelalgia (EM) is life changing and can cause severe impairment. Many sufferers are left disabled, some commit suicide as a result.

EM causes severe burning pain, visible redness (erythema) of the skin, swelling, and increased skin temperature, particularly of the hands and feet. However, the face, ears, and limbs can also be affected. Some people burn continuously, whilst others have intermittent episodes of “flaring” throughout the day.  The excruciating flares can last from hours to days at a time. The disease does not discriminate by age, ethnicity or gender.

The exact underlying cause of EM remains unknown. However, one theory maintains the condition results from vasomotor abnormalities. These abnormalities affect the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, which leads to impaired blood flow to the extremities or other body parts.

In this article, we are going to introduce you to four inspirational children who suffer from EM and give you a glimpse of their everyday lives.

Meet Sebastian Soares, 12 years old, Massachusetts

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Sebastian is the oldest of three brothers and has the inherited form of EM, meaning he was born with a mutation in the sodium channel gene (SCN9A).  He has the genetic form of erythromelalgia together with small fiber polyneuropathy.

It was in 2009 that Sebastian experienced what seemed to be a jolt of neurological pain in his leg. Although the pain only lasted a few seconds, it caused him to fall to the ground screaming. He suffered from episodes like this intermittently over the next five years.  Sebastian was bounced around from doctor to doctor but, despite numerous tests and examinations, no explanations were provided.

In January 2015, Sebastian started experiencing severe burning in his hands and feet along with shooting pains, which limited his ability to walk. His hands and feet were bright red and burned 24 hours a day. Even the touch of clothing on his skin would trigger pain in his body.  Sebastian’s mother, Sarah, 35, also has EM. Her symptoms developed when she was 8 years old.  Being an EM sufferer herself, she recognized her son’s newest symptoms. It was then that Sarah contacted Mass General Hospital in Boston to get Sebastian in with a neurologist. While waiting for his scheduled appointment, Sebastian continued to live in torment. He typically left school halfway through the day crying in pain. Eventually, he ended up confined to a chair with a bucket of cold water and fans blowing on him all day. Sleeping was nearly impossible.

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Notice Sebastian’s red, burning lower legs and feet yet he’s still holding a smile

The neurologist who officially diagnosed Sebastian with EM was reluctant to prescribe medication. Therefore, Sebastian was referred to children’s hospital where he was admitted to the Intensive Care Unit and put on a lidocaine infusion to help stabilize his pain. It is quite difficult to treat a child with EM because strong medications are rarely, if ever, administered to pediatrics. He was slowly transitioned to oral mexiletine. Mexiletine is a non-selective voltage-gated sodium channel blocker, which belongs to the Class IB anti-arrhythmic group of medicines. It is used to treat arrhythmias within the heart or seriously irregular heartbeats. This is a rarely given off-label treatment.

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The burning in Sebastian’s legs and feet was so intense that it would take a few more stays in the hospital before his pain could be stabilized.

Sebastian felt incredibly isolated and alone. Play dates did not exist anymore and he lost friendships. He was a prisoner in his own house. His mother felt helpless so she decided to do something about it. She opened a post office box. Then she wrote about her son’s situation on social media and asked for letters or cards with words of encouragement.  Before she knew it, Sebastian was receiving cards, drawings, toys, letters, and care packages from all over the world.  It put a smile on his face over the next few months.

About six months later, in early 2016, Sebastian finally had a treatment dosage that helped the burning subside. He was able to return to a somewhat normal life but with limitations, of course. He must take his medications (mexiletine and gabapentin) every four hours around the clock. Although his parents are worried about the long-term effects of the medication, they are more concerned with giving him a good quality of life. He still experiences daily pain daily but not nearly as bad as in the years prior to treatment.

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He is most affected now by heat and fluctuations in temperatures and, because of this, he is being homeschooled. Sarah and Sebastian experience worse flares in the winter (as do many EM sufferers).

Sebastian is part of a local youth center, which has been an amazing experience for him. He has made new friends who are there for him through the good times and bad. He has a close friend, Dahlia, who he is incredibly thankful for. Since 2015, she has stood by his side.

Overall, he is now a happy kid who has adapted as best he can to this condition. The family is thankful for the incredible team of doctors at Mass General.

Sarah’s youngest son, Oliver, 5, also has the same genetic mutation, but no EM symptoms have appeared yet. 

Meet James Dennee, 7 years old, Maryland

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James was diagnosed with EM in 2015. Since then his life has been a rollercoaster of agony and emotions. During his first year with EM, he missed so many days of school due to pain that his mother, Shanna, who also has EM, decided to devote her time to homeschooling her son. Although homeschooling has benefitted his education, it has its downfalls. A once cheerful and socially active little boy, James is now withdrawn from fun events that would allow him to interact with other children. He has anxiety about leaving the house and dealing with his pain while out in public. Although he is comforted by many who love and care for him, he sometimes says he hates his life. His mother is grief-stricken because there is not much she can do other than comfort him and try to relieve the burning as best she can.

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Vacations are no longer enjoyable because James fears the burning pain he may experience from walking, sunlight, and various other triggers that cause flares for him.

James has big dreams of being a storm chaser or marine biologist someday. He loves learning about sharks.

Meet Ascanio Guerriero, 9 years old, Italy

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Ascanio was diagnosed by chance with EM in 2012. No other family members have EM. It was extremely difficult to get Ascanio officially diagnosed because there are only five reported cases of EM in Italy and no specialized doctor. Life was absolute hell for four straight years. Ascanio could not wear shoes or enter the kitchen when his mother was cooking. He stayed indoors with the air conditioning running during the hotter months. He spent many nights awake and crying with ice packs resting on his hands and feet.

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Ascanio is fortunate in that mexiletine has put and kept his EM in remission. He started taking the medication in late 2016. The only real problem has been the side effects from the medication, particularly headaches. His headaches cause him a few sleeping difficulties and concentration problems.

These days Ascanio feels good and he loves high adrenaline activities, especially motocross.

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Meet Chandler Keller, 17 years old, California

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Chandler was originally diagnosed with Complex Regional Pain Syndrome (CRPS) when she was 12 years old. However, her diagnosis was questioned after a nurse witnessed one of Chandler’s flares while she was recovering from surgery in the hospital. Chandler had undergone an extremely painful spinal surgery due to scoliosis where she had two rods and 26 screws put in to help straighten her spine. It was during her flare when the nurse mentioned that it resembled EM more than CRPS. The EM diagnosis was later confirmed and Chandler also tested positive for the mutated sodium channel gene.

Some days the pain is unbearable for Chandler. Her EM has progressed from her lower legs and feet to her hands and face. She cannot relieve the burning without the assistance of a cold bath or soaking her feet in a bucket of ice water. Because of the agony, sleep is always a challenge.

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She is a junior in high school and is therefore permitted to be on the early-release program. She departs the school daily around 12:30 p.m. When she arrives home the first thing she does is soak her feet in cold water for 20 minutes then takes a lengthy nap. It is mentally draining to fight this kind of pain day in, day out. After her nap, she does her homework, eats then tries to sleep. Every day is like Groundhog Day as she repeats the same cycle.

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Chandler’s physician put her on gabapentin and she slowly worked her way up to 2,700 mg a day. She has tried almost anything and everything to relieve her pain such as CBD oil, hemp root salve, and several other natural remedies.  Her next plan is to try an all-natural whole foods diet.

Not a single day has gone by since Chandler was 12 years old where her feet have not been bright red. Her ankles are always swollen. Sadly, her family has learned more about EM from Facebook group forums than from her doctors.

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So what can you do to help?

Share this blog: Awareness begins by spreading the word.

Help us raise awareness: The Erythromelalgia (EM) Warriors is a non-profit organization providing patient support and information to those suffering with this dreadful disease. https://www.facebook.com/ErythromelalgiaWarriors/

EM Warriors is sponsoring a campaign called the Red Hand Challenge.

Please click on the link below to learn more:

Red Hand Challenge Event

Donate: No amount is too small. Erythromelalgia desperately needs funding for research and awareness. A contribution of any amount is greatly appreciated. If you would like to contribute, please click on the link below:

Donate here

Sociopaths: A Lost Conscience

The Road to Hell was paved with their Ugly Intentions

You know these people. They look just like we do. They eat the same foods we eat, wear the same apparels we wear, and sleep under the same sky we sleep under—you could even be sleeping next to one of these hell-raisers and not even know it. You’ve seen these individuals in action, working their wicked, magnetic brand of charm and humor. They function mainly unobserved —until they don’t, at which point it’s probably too late because they’ve already claimed your trust and livelihood. We’re talking about sociopaths, those human beings who move through life controlling you through their manipulation and deceitfulness.

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Perhaps you’re wondering how to prevent yourself from falling prey to the dangerous games sociopaths play. Not all sociopaths are serial killers roaming the streets in search of their next victim. They’re actually more common than you may think. It’s been suggested that one in 25 people are sociopaths. A high-functioning sociopath could be spreading mayhem and misery in your life disguised as a parent, child, partner, family, friend, or coworker. I have some crazy personal stories to share but we’ll get to that a little later in this blog.

Sociopaths fear two things: (1) Losing control. (2) Being Exposed.

First, let’s talk about when it usually all begins – Childhood. If the sociopath is a child or teenager the signs are more difficult to recognize because it’s not ‘all or none’ when it comes to them. Most young people who demonstrate sociopathy tendencies can at times be considerate, caring, and sensible. However, many display a lack of concern for the rights and feelings of others and are inconsistent in their behavioral patterns. It’s confusing for parents because often times their children will display a mix of strengths and weaknesses like every other child.

SOCIOPATHY SIGNS IN CHILDREN:

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  1. Indifference to consequences

One of the revealing signs of sociopathy, Psychology Today says, is an indifference to looming consequences. Sociopaths do not fully grasp the potential consequences of their risk-taking. A sociopath doesn’t register consequences as a negative effect, which could lead to poor choices with potentially grim results.

  1. Lack of empathy

Children with sociopath tendencies have an Inability to feel empathy for others or to understand the emotional consequences of their actions. There’s little compassion or sense of loyalty to others, particularly their siblings or friends.

  1. Frequent Lying without guilt

It’s not the lying itself that may raise early suspicion of sociopathy; it’s the fact a child can do so without considering ramifications. Most kids will look guilty when caught in an ugly lie, because they know it’s something they shouldn’t be doing and their parents won’t be happy with them. Kids with sociopathic tendencies, though, are unremorseful.

SOCIOPATHY IN TEENS:

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According to Psychology Today, the hallmark of teen (male and female) sociopathy is the inability to maintain close and consistently harmonious relationships and to feel accountable and remorseful when he/she does something that hurts another’s feelings.  This chronic disorder can be a result of interactions between genetics and environment, according to Mayo Clinic. Sociopathy cannot be officially diagnosed until a teenager has reached the age of 18, according to the American Academy of Pediatrics, but the indications are typically present before the age of 15.

The biggest sign of sociopathy in teens is a lack of empathy. Other symptoms include persistent lying, manipulating others with charm for personal gain or desire, irritability, impulsiveness, promiscuity, and possibly aggression. A sociopath typically shows no remorse for hurting other people, even those they claim to love. They may suffer from periods of depression and anxiety and problems in school. Sociopath teens often have relationship difficulties, both within their families and with friends.

According to Psych Central, lying behaviors in teens may include lying about others (even their parents), or changing bits and pieces of a story to make part of it true and the other part a lie. Also, teens who calculate and manipulate in order to harm others are often the most frightening. Why? Because they are cloaked with the innocence of their youth and are often given the benefit of the doubt by adults. Who would want to see their own child or adolescent as one with evil intent?

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SOCIOPATHY IN ADULTS:

THE MOTHERSHIP HAS LANDED. Don’t walk. RUN! Nothing good can come from having a seasoned sociopath in your life, and especially not a romantic relationship. They con their victims into believing they’re kindhearted and have their loved one’s best interest at heart but they are only exemplifying a front. Whoever they are trying to portray doesn’t actually exist.

Deep down, these people are cold-hearted, and they completely lack the full range of human emotion. The only person they care about is themselves. People in their lives are seen as possible targets for their own self-centered, deviant needs.

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I married a sociopath but I didn’t recognize the signs until it was too late. He won me over with his good looks, witty charm and sense of humor. Little did I know I was being swept under the influence of a charismatic nut-job. He had mastered the “mind-f**k” game and enjoyed every minute of it. He tried making ME believe I was the insane one. I remember thinking, “Am I crazy? And how would I know if I’m crazy because do crazy people actually KNOW they’re crazy?” As wacky as that statement may sound, that is how a sociopath manipulates their partner’s mind. My ex was verbally, emotionally, and physically abusive, and he put on a total façade to the public. We went away for a long weekend once and upon arriving at the hotel the clerk greeted us a “Dr. and Mrs. _____.” Baffled but humored, I chuckled about it with my husband as we entered the elevator assuming she had mixed us up with another couple. After all, he was an engineer and nowhere involved in the medical profession. Ummm, no. My ex had actually booked our hotel stay as “Dr. and Mrs. _____.” He thought it’d be funny. Who does that??

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No matter how deteriorated my life had become with my ex, I always hid my pain well by keeping a smile on my face.  I was too humiliated to let others know the pain I was feeling, and too afraid to walk away.  Few people knew the horrifying details of my relationship, and the ‘secrets’ of the dark soul I had married.

He lied about his debt, career history, and why previous relationships had ended. He claimed to have a Bachelor’s degree but he didn’t. No employer asked for proof so he just never got caught. One company fired him yet he pretended to still be employed by getting up and ready for work every morning. He left our home before me and returned after I got home from work, still dressed in his business attire. It was all an act. He had actually been unemployed for three weeks before I found out. I had called his office phone vice his cell and a coworker answered.

He used to log into online chat rooms just to cause turmoil with random people. He’d ‘private message’ total strangers telling them lies about their partners because he thought it was funny. A con-artist, he thrived on the chaos and the gloom of others.

I had no idea how he was able to get under my skin like a flesh eating bacteria and stir up so much damage in my life in such a short amount of time. Fear prevented me from leaving sooner but finally after four years of pure hell, I left him. Rock bottom literally became the solid foundation on which I rebuilt my life. It’s better to have loved and lost than to spend the rest of your life with a sociopath, believe me.

To read my blog about my abusive marriage to a high-functioning sociopath, click here:

I Married A Complete Stranger

FEMALES OF ALL AGES CAN BE SOCIOPATHS.

Females fall under the same warning signs as males but with an added twist.

(As described on website softpanorama.org) Dr. Martha Stout, in her book ‘The Sociopath Next Door’, discusses the techniques of the sociopath — what she refers to as ‘the tools of the trade’. Among the most typical we can mention the following:

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  • Charming the victim. Dr. Stout believes it is a primary characteristic of a woman sociopath. Truly talented ones have polished their ability to charm people into an art, priding themselves on their ability to present a fictional self to others that is convincing, taken at face value, and difficult to penetrate. One must always keep in mind that the charm, like manipulation in general, can be very subtle.
    • Provocative (or seductive) behavior; early and repeated attempts to breach the personal distance while not being acquainted for a long time.
    • Attention-seeking behavior, especially efficient when it comes along with physical beauty. Physical beauty is the trait that makes female sociopaths so dangerous, as it disarms people.
    • Influence others and adapts to them seamlessly.
    • Make-up, hair style, clothing, perfume, the whole physical appearance are well thought out.
    • Exaggerated emotions; theatrical behaviors.

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  • Gaslighting. A common practice of abusers who attempt to convince their victims they are defective for any reason such as making the victim more emotional, more needy or dependent. For example, if an abusive person says hurtful things to you to cause your distress and then tries to convince you that you are mentally unstable and starts recommending that you get professional help, you might be in the presence of a gaslighter. 
  • Projection. Sociopaths refuse to be held accountable for their behavior.
  • The pity play. It’s okay to pity someone who has gone through difficult times, but if you find yourself feeling sorry for someone’s sad story, make sure the story is true. The pity play should be a warning sign to all of us as this is a very typical tool for female sociopaths.

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  • The entrapment of the victim. Often the entrapment of the victim goes in several, overlapping phases:
    • Assessment. During the assessment phase, the sociopath is able to determine a potential victim’s weak points
    • Manipulation. Once the sociopath has identified weaknesses of the victim, the manipulation phase begins. During this phase, a sociopath may create a persona or mask. A sociopath’s lack of empathy and guilt allows them to lie with ease. They are usually compulsive liars, actors who all their life are wearing some kind of fake personality.
    • Seduction. They use the same techniques as male sexual predators trying to condition the victim by shaking their moral norms and convictions.
    • Blaming the victim. They never accept responsibility for anything bad that happened. It is always somebody else’s fault.
    • Constant lying and perfect mimicry to the expectation of the victim.  Female sociopaths lie and wear a fake persona to gain the trust of their victim.  They are usually compulsive liars and perfect cheaters.

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QUICK CHECKLIST: Know Some of the Big Signs

  1. Superficial Charm

Sociopaths often appear to be very charming on the surface in order to create a facade. They are very aware of the effect their charm or wit may have on others, as their pretense of likability allows them easily gain people’s trust.

  1. Narcissistic

Sociopaths are extremely egocentric, believing that they’re always right and that everyone should agree with their actions and opinions.

  1. Pathological Lying

Sociopaths have no problem lying easily and it is almost impossible for them to be truthful on a steady basis. They’ll lie, and lie, and lie some more in order to create a false façade. Lying comes naturally to them, because they aim to hide their true motives.

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  1. Manipulative and Cunning

Sociopaths never recognize the rights of others and see their self-serving behaviors as acceptable. They appear to be charming. Don’t be fooled.

  1. Shallow Emotions

Sociopaths do not genuinely feel emotions. When they show what seems to be warmth, joy, love and compassion it is artificial and serves an ulterior motive. They’re unmoved and cold by what would upset a normal person.

  1. Lack of Remorse, Shame, or Guilt

Sociopaths are infamous for being devoid of these three emotions. They do not feel bad about their actions, even if these actions hurt others.

  1. Incapable Of Human Attachment

Sociopaths are unable to form genuine relationships with others. They will usually struggle to make friends or maintain romantic relationships.

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  1. Constant Need for Stimulation

Sociopaths suffer from boredom easily, and they need constant stimulation in their lives. This desire is related to their natural need for self-gratification. Their need for stimulation can cause to them to take needless risks that put themselves and others in unsafe situations. Promiscuity and gambling are common.

  1. Lack of Empathy

They are incapable of empathizing with others. For example, if someone told you a depressing story about a family member dying, you would feel sympathetic to their grief and pain. A sociopath, on the other hand, would feel nothing. In fact, lack of empathy shown by children could be an indicator of their later onset of sociopathy.

  1. Poor Self Control / Impulsive Nature

Sociopaths will exhibit very short tempers, as well as hostility, irritability, and aggression. They’ll act on their impulses without thinking or caring about any potential consequences. They may behave violently or impulsively, and also may have problems with drug and alcohol use. These characteristics typically make people with antisocial personality disorder unable to fulfill responsibilities related to family, work or school.

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  1. Promiscuous Sexual Behavior / Disloyalty

Sociopaths are likely to be unfaithful and promiscuous, which is connected to their tendency to get bored easily. As mentioned earlier, they need continuous stimulation.

  1. Irresponsibility/Unreliability

Sociopaths aren’t bothered by wrecking others’ lives and dreams. They’re unaware or unconcerned to the devastation they cause. They don’t accept blame on themselves, but blames others, even for acts they’re obviously responsible for.

Differences between Sociopaths and Psychopaths

There is little agreed difference between sociopathy and psychopathy, but some psychologists agree that psychopaths are more calculating and measured in their actions. The psychopath will be more likely to construct a complex scheme or plan and to carry it out, whereas the sociopath is more driven by impulsivity. This makes the psychopath more likely to commit crimes and generally the term psychopath is used more generally to describe the criminally insane rather than just the lack of empathy.

Can A Sociopath be Cured?

It’s complicated due to the variety of ways in which the disorder exhibits in each person afflicted with it.

“Though antisocial personality disorder is difficult to treat, for some people, treatment and close follow-up over the long term may be beneficial,’’ according to the Mayo Clinic. “Look for medical and mental health professionals with experience in treating antisocial personality disorder.”

TAKE THE SOCIOPATH QUIZ! (Click link below)

Are You A Sociopath Quiz

 

Brave Girl Battles Two Rare Diseases

Chloe’s Hope: Stop the Burning

What does a juvenile disability look like?  Some might envision a homeschooled child or perhaps a wheelchair user. What if a child outwardly appeared normal yet their insides were screaming in agony?  Try to imagine a child who’s never known a life without horrendous pain and suffering.

That is the case for 11-year-old Chloe Louise Kuschert of Corowa, a town in the New South Wales in Australia. She oftentimes cries to her mother, “Why me? Why can’t I have a normal life? I hate this so much.”  But all her mother can do is comfort her and wipe away the tears streaming down her face.

Chloe was just two years old when her health began rapidly deteriorating. It started with a sensitive area that some people wouldn’t feel comfortable talking about. Debilitating symptoms of bleeding, swelling, redness and pain developed in her vulva (female external genitals) area. As her condition progressed, the burning became so excruciating that Chloe could no longer function. Her life became overshadowed by throbbing pain and discomfort. After visiting numerous doctors over a 4-year period in Australia, doctors were still unable to diagnose Chloe’s condition. The doctors decided to have Chloe’s medical chart reviewed by a pediatric group based out of the United States where a genetic specialist finally made the diagnosis.

Chloe had a rare disease called Erythromelalgia (EM) which not only affects her vulva area, but also her face, ears, and hands.  The condition affects 1.3 in 100,000 people, and there is no cure.

EM causes unbearable burning pain, noticeable redness of the skin, swelling, and increased skin temperature. The exact underlying cause of EM is unknown. It’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.

There isn’t a typical treatment for EM, and sometimes nothing helps. Chloe has tried many prescriptions and supplements, and dealt with dreadful side effects. She is on a strict ‘cooling’ regime to prevent overheating.

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EM flares on Chloe’s face and ears

“Managing her EM pain is incredibly difficult,” said her mother, Jacqui. She  went on to say that every day is a battle in which Chloe fights for her joy and freedom from pain. Since the condition also affects her private area there is no way of knowing the impact it will have on adulthood with sexual activity and childbirth.

Chloe’s health continued to worsen over the next several months after her EM diagnosis. She began experiencing vaginal bleeding, frequent toilet needs, urinary incontinence and burning along with bladder and stomach pain. After seeing several doctors, going through more examinations and cystoscopies, a gynecologist diagnosed Chloe with interstitial cystitis (IC), a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.

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“I felt helpless as I just sat there crying. I wanted to take all of her pain away,” Jacqui said.

Chloe has been repeatedly tested for everything you could possibly imagine and still no doctor can provide answers.

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Just a few months following the EM and IC diagnoses, Chloe developed more unbearable symptoms. Her joints began aching and swelling, and she bruised more easily. She had trouble walking due to the pain in her knees and ankles. Ultimately a rheumatologist diagnosed Chloe with Ehlers-Danlos Syndrome (EDS), a group of inherited disorders marked by extremely loose joints, very stretchy skin that bruises easily, and easily damaged blood vessels. EDS affects about 1 in 5,000 people globally.

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Most parents couldn’t fathom their child dealing with one rare disease let alone two.  The effects of having all three conditions has caused Chloe to have fainting spells, abdomen pain almost daily, dizziness, and low blood pressure.

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“To manage her many combined symptoms Chloe regularly sees a local general practitioner, pediatrician, gynecologist, neurologist, and a cardiologist. Currently she’s taking 11 pills a day plus a pain reliever in an effort to give her a somewhat normal life. Of all her conditions, EM is the most painful for Chloe,” her mother said.

Chloe is in the fifth grade. She battles through the pain most days because she loves attending school. Her teacher is very kind to her, and her classmates are supportive and understanding. She’s sad to miss school days when she’s overwhelmed by pain.

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An emotional Chloe as she struggles with daily pain

EM causes the body to quickly overheat during physical activity so Chloe is unable to participate in any outdoor sports. Although it’s disappointing, Chloe maintains a positive attitude. Instead she enjoys reading and doing arts and crafts.

Chloe enjoys spending time with her family — mother, Jacqui, father, David, and brothers, James, 18, and Caleb, 14.  She also loves hanging out with her dog, Molly, and her rabbit, Gizmo.

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Chloe with her brothers, James and Caleb

“The unknown is scary. I don’t know if my daughter will ever live a normal life, free from pain and misery. I want her to be happy, and not just have ‘happy moments.’  This is all very devastating.  I also have to accept that she may never experience the gift of pregnancy. I’m heartbroken inside,” her mother said.

Disabilities aren’t always recognizable to the public. So when you see a child who seems carefree and happy, please think of Chloe. There are children out there like her whose lives are a lot harder than they appear to the outside world.

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If you’d like to support Chloe Kuschert, you can do so by helping spread awareness.  Please Like and Share her Facebook page titled Chloe’s Hope: Stop the Burning

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Chloe and her mother, Jacqui

To see this story on The Huffington Post:

Brave Girl Battles Two Rare Diseases

To read more about Erythromelalgia, please see the following blog:

Burning for Hope

Jacqui and Chloe are active members of the “Parents of Little EM Warriors” program where they communicate and share their experiences with other families in need of support. Join “Erythromelalgia Warriors” on Facebook to learn more.

EM Warriors on Facebook

Chloe has also joined the “I Am The Face of Erythromelalgia” campaign.

Please Join Our Campaign here

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EM Awareness Video:

Time Waits for Nothing

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It’s free yet it’s priceless. You can use it but you can’t borrow it. It can be your friend or your worst enemy.  You have no control over it, and you can’t move it forward or slow it down.   What is it?

It’s called TIME – a simple four-letter-word with such powerful meaning behind it.  “Time = Life.”  Time is the only unpredictable measurement that comes between the moment you’re born, and the moment you take your last breath.  But what is time to you?

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The word “time” creates an image in my mind of an Olympic athlete racing against a clock toward the finish line. Nothing matters more in that moment than time itself; every fraction of a second counts.  Another moment I envision is watching the countdown of the clock during a football game, and the opposing team is down by just a few points.  When you think about it, one could say there is no such thing as losing; they just simply ran out of time. Regardless, “time” is not only about winning or losing.  It goes far deeper than that.

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When the devastating 9/11 terrorist attacks occurred, it made the world question many things, including the meaning of time, and how invaluable it is. Typically, you wouldn’t foresee a national tragedy to have a theme song, but on how many occasions did you hear “Only Time” by Enya playing on the radio during that heartbreaking era?  Employees’ working in either trade tower that were running late that morning thought time wasn’t on their side. On the contrary, time is what saved their lives. Same goes for the passengers who missed their flights that day. Just think if only one person didn’t make it on time to their metro station stop; or if someone stopped to tie a shoelace on the sidewalk; or the coffee shop had an unusually long time that morning.  All of those examples of time could have meant the difference between life and death that day.

Time is everything when a loved one is dying. Imagine a Hospice nurse’s role in helping patients with their end-of-life care. “Time” is what they represent to grieving families. The nurse measures the patient’s pulse beat per minute.  When the time has come, the nurse peacefully says, “I’m so sorry for your loss.”  Just like that, their time on earth is done.  Life in human form is gone forever, and a permanent date and time is marked on a death certificate.

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Just as time can take away a life, it can also represent the spirit of bringing a new life into the world. Most mothers could tell you the exact time their child was born.  After nine months of anticipation, excitement, and curiosity, time is no small thing to a mother.  Many expectant mothers can’t wait for “time” to reveal their baby’s gender before it’s even born.

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The only time one person’s life and another person’s death play a role together, at the same time, is through organ donation. Organ donors make the ultimate sacrifice in saving another person’s life. Matching and compatibility are everything when it comes to saving a life.  Will the recipient receive the organ in time?  Only time will tell.

There are moments when “time” feels like an unattractive word:

  • To a coworker, “I’m sorry you didn’t get the promotion.  It just wasn’t your time.”
  • After a loved one dies, “I’m so sorry for your loss. Time makes things easier.”
  • Once a relationship ends it’s usually accompanied by, “Love takes time to heal.”
  • When a student hasn’t finished taking their exam before the teacher yells, “Time’s up!”
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Just like the old saying goes, “Time flies when you’re having fun,” it can also drag when life sucks. Prisoners and insomniacs probably know this better than anyone.  For insomniacs, it’s unbearable to watch minutes tick by while you’re lying there wide awake.  Waiting on medical results is a time-dragging experience as well.  Also, chronic pain sufferers know how slow time can move. Time may not fix anything but it does teach us how to live with the pain.

Regardless of whether you use it wisely or waste it away, time keeps on ticking.  And we shouldn’t question the days we’re stuck in traffic or got up late for work.  Perhaps there is bigger meaning behind those moments saving us from a misfortune?

No one would be able to recognize good times without having bad ones.  Time is a part of where you are, what you do, and who you’re waiting for.  Until the moment we die, “time” makes us all equal in that we each get twenty-four hour days.  How we choose to spend it is what determines our future.

As Michael Altshuler said, “The bad news is time flies. The good news is you’re the pilot.”

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Brayden’s Story: Braving a Life of Fire

It’s the worst four words any parent could hear when their child is painfully sick: “THERE IS NO CURE.”

Brayden Underhill of Wisconsin was three years old when he had his second clubfoot surgery. Sheena Buffington, Brayden’s mother, noticed odd symptoms following his period of recovery.  Brayden’s feet were unbearably hot to a point she began using a fan to cool them down.  If he stood barefooted on a cold cement floor it helped sometimes.

His symptoms rapidly progressed to where he felt like he was living inside a scorching fire.  His mother felt desperate to relieve his agony, so she began short sessions of soaking his limbs in an ice-filled cooler.

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They visited numerous doctors, but none could provide answers for his unusual, incapacitating symptoms.

Eventually, the frequent ice immersions caused swelling and deep lacerations all over his lower legs and feet.  Brayden was hospitalized, and crippled in pain beyond words.

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“The pictures still make me cry every time I look at them,” his mother said.

The family continued visiting different physicians but no one knew what it was, or how to treat it. Sheena spent hundreds of frantic hours on the internet trying to diagnose her son’s condition. Brayden would have to wait two more grueling years for a diagnosis.

“I was so frustrated, and I couldn’t stand seeing my child in such pain. I wanted answers, and I wanted it treated fast,” Sheena recalls.

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Finally, after several long-distant excursions to and from the Mayo Clinic in Rochester, Minnesota, a dermatologist gave them the devastating news. Brayden had a rare disease called Erythromelalgia (EM).  It affects 1.3 in 100,000 people, and there is no cure.

EM causes severe burning pain, evident redness of the skin, swelling, and increased skin temperature. The exact underlying cause remains unknown. However, it’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.

There isn’t a standard treatment for EM, and sometimes nothing helps.  Brayden has tried a bunch of different medications, and dealt with horrendous side effects.  Some of the prescriptions actually made the EM more painful.

Since the age of 3, Brayden has averaged about four hours of sleep a night (confirmed through a sleep study).  He sleeps bent over the bed with his feet hanging off so he can feel the fan’s breeze on his legs. He often wakes up in the middle of the night, struggling with pain.

Eight years later, 11-year-old Brayden still lives with crippling, chronic pain. His disease has progressed to his legs (from the knee on down), hands, ears, nose, and cheeks.  He feels like he is burning alive. He uses a fan almost 24 hours a day, and cannot tolerate shoes or socks.

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Brayden is in the 6th grade, and still manages to attend a public school with the help of his wheelchair and a portable fan he keeps near his feet. His mother debates having him home schooled because she feels it’s so important for him to be around other children. The school system has worked with his parents in making adjustments for his physical limitations.

“He has come home from school, feeling sad after watching his friends play football or basketball, knowing he can’t participate,” his mother said with sorrow.

Brayden describes his intense burning as “feeling like my body is crying inside.”

He finds some small relief by crossing his legs and pulling them tightly against his chest. However, his physical therapist has discouraged him from doing this because overtime it could permanently weaken his posture and muscle integrity.

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“After you get over being mad, and frustrated that no doctor can help him, we realized we needed to live with this. We try to come up with different ways to do things.”

Brayden has anxiety about leaving the house because he worries how his limbs will behave.

One time his family drove two hours to the zoo when Brayden overheated, and within 10 minutes he was in dire need of cooling packs and cold wet towels. Those methods didn’t provide any relief so they tried their vehicle’s air conditioning, which also didn’t work. They ended up having to leave.

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“Every day I wish I could make all of this all go away so he can live a normal life,” his mother said.

He currently sees a pain specialist, neurologist, and pediatrician. Most often, he sees the pain management doctor.

Distraction is key when it comes to Brayden’s physical and mental survival. He enjoys playing games on his Xbox, and watching movies and YouTube videos. His favorite action hero is Batman. Occasionally he’ll have a friend over, and might try to play outside for 30 minutes if it’s cool or cloudy.

Strangers have called the police claiming child abuse, after seeing Brayden’s parents carrying him outside barefooted during winter months. On another occasion, authorities were called while Brayden and his family were dining together in a restaurant, again assuming he had been a victim of child abuse. His parents requested a doctor’s note to avoid such encounters in the future.

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(Pictured above: Dad (Troy), Mom (Sheena), Sister (Jade), and Brayden)

“Coping as a family has been incredibly hard, but every day we learn, and try to find ways to accommodate Brayden’s needs,” Sheena said.

Brayden and his family have learned to deal with the constant staring and comments from strangers. Typical remarks include: “Wow, you’re really sunburned,” or “Did your legs get burned in a fire?”

He’s embarrassed to be seen in his wheelchair so he only ventures to the local department store about twice a year.

His mother would love it if others could show Brayden their support, so that he doesn’t feel so alone in the world.  Perhaps people could share a photo or words of encouragement on their personal social media account with “#BraydentheBrave” to let him know people do care, and it’s okay to enter a department store with a physical disability.

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This article is also available on The Huffington Post:

http://www.huffingtonpost.com/melissa-curley-bogner/the-brave-boy-trapped-ins_b_9843794.html

To read my other article on Erythromelalgia on The Huffington Post:

http://www.huffingtonpost.com/melissa-curley-bogner/burning-for-hope_b_9618652.html

Erythromelalgia Awareness Video: