Raising the Awareness of Cerebral Palsy

Raising Awareness of Cerebral Palsy

Cerebralpalsyguidance.com is a comprehensive source for information on the complex condition of cerebral palsy.

One of the major goals of National Health Education Week is to raise national awareness of major diseases and promote a better understanding of the role of public education in dealing with them, and this is certainly true in the case of Cerebral Palsy and the impact that it has on patients, their families, and the community as a whole. Cerebral Palsy refers to a group of disorders that damage the brain during the initial developing stages after birth or while still in utero. The resulting damage can affect the body’s ability to move, muscle tone, control, or coordination, reflexes, posture, and balance. There may also be intellectual impairments, vision and hearing problems, and epilepsy. Cerebral Palsy is a permanent condition.

When it comes to what causes Cerebral Palsy to develop in the first place medical science is still a bit in the dark. There is no single cause for the disease and in many cases, it is unknown why a baby is born with it. There is some evidence that certain complications with the birthing process such as asphyxia or lack of oxygen can play a role, but on the whole, it is still a mystery. What researchers are confident of is that there are a bunch of issues that can take place during the development of a fetus that can increase the odds of Cerebral Palsy developing. Chief among these indicators are premature birth, low birth weight, and blood clotting problems. Other possible causes for Cerebral Palsy can include an infection or environmental exposure (e.g. lead poisoning) while in the womb and genetic problems.

When diagnosing Cerebral Palsy there are certain markers that physicians look for as indicators. These markers are not generally the result of any single examination, but instead are part of a lengthy screening process that is usually conducted between the ages of 2 to 5. That said, sometimes the symptoms are severe enough that doctors can make a diagnosis shortly after birth. The screening process is normal for all babies and is designed to see if they are suffering a multitude of possibly life inhibiting conditions such as hypothyroidism, galactosemia, and sickle cell diseases. There are also a set of tests to check metabolism, hearing, and vision, as well as the APGAR (activity, pulse, grimace, appearance, and respiration) score which can all contribute to a diagnosis.

There are no known cures for Cerebral Palsy, however, there is a range of treatments available to help children reach their greatest potential as they develop and mature into adulthood. This often takes the form of assistance in learning how to control motor functions, speech, learning, and dealing with their environment. Medications are also prescribed to help mitigate muscle pain and stiffness, and in some cases, surgery is used to correct scoliosis which is a common trait among sufferers of Cerebral Palsy.

Cerebral Palsy affects approximately 1 million people in the United States and can be devastating if not properly diagnosed at a young age. Treatments are available to help, but perhaps the biggest help comes from raising awareness of this condition and to encourage research that will hopefully one day finding a cure.

 

Mesothelioma in Children: Childhood Cancer Awareness Month

Mesothelioma in Children: Childhood Cancer Awareness Month

Mesothelioma.net is a comprehensive source for information on mesothelioma.

September is Childhood Cancer Awareness Month and the facts are that just under 16,000 children and young adults are diagnosed with some type of cancer each year, and about a quarter of them do not recover. Mesothelioma is a very malignant, but rare cancer in adults, and it occurs even less often in children. This is generally because mesothelioma can take decades to fully develop and cause symptoms.

Causes of Mesothelioma in Young People

Asbestos exposure is almost always the root cause behind cases of mesothelioma. When adults are diagnosed with the disease, it’s usually because they had some exposure to it at an earlier point in their lives. Along with direct exposure, it’s also possible for families of asbestos-exposed workers to have secondhand exposure. This can occur when the worker comes home and has asbestos fibers on their clothes or in their hair. However, with children, it seems unlikely that asbestos exposure is the direct cause of mesothelioma. A study of 80 childhood mesothelioma cases revealed that only two children had previous asbestos exposure. Inhaled asbestos fibers typically do not cause any damage until many years down the road. Instead, researchers have found preliminary evidence that radiation exposure could be a risk factor in childhood mesothelioma cases. Other theories include the BAP1 gene and isoniazid exposure at the fetal stage.

Symptoms of Children with Mesothelioma

Some of the same symptoms that adults get with mesothelioma are also present in children. Appetite loss, weight loss, chest pain, difficulty breathing and fever are all typical symptoms. Unfortunately, these symptoms can easily represent another condition, which is one of the reasons why mesothelioma is often not diagnosed until it’s reached a critical stage. Such a diagnosis is less likely with children as it’s an even rarer disease in that age group.

Treatment of Children with Mesothelioma

Similar treatments are used for children with mesothelioma as for adults. Radiation and chemotherapy are the most common. Surgery can be more difficult on younger children especially. In cases of metastasized cancer, surgery is even less likely to be an option. Treatment is also just as difficult for children as for adults. In a review of seven childhood cases, only two of the children made it past five years after the initial diagnosis. The other cases saw no improvement after radiation and surgery. Chemotherapy allowed a few cases to stay in remission for over five years.

Mesothelioma is an appalling disease and it’s tragic for anyone to be diagnosed with it, much less a child. Research on the rare diagnosis continues to improve in hopes that future cases will be much better understood.

 

What It’s Like When Someone You Love Has Terminal Cancer

Guest Blogger, Kimberly Kow, originally published on Scary Mommy

What is it like when someone you love has terminal cancer?

It is one big mindfuck.

The slow agonizing pain of anticipatory grief can chip away at one’s soul and wear you down like waves churning rocks into sand. Anticipatory grief is the thief that steals joy from the present. It is hard to shake this thief. Seemingly happy moments shift reluctantly and without warning into a bittersweet mess of emotions.

You want to spend every day living for each moment. But instead, you spend most days gripped in fear, panic, helplessness, and all the emotions in between. Remaining grateful for what you do have helps. But it doesn’t take away from the fact that you are straddling the unknown and about to barrel toward a place you do not want to be. The longing for more of these moments, for time, is fierce and unrelenting.

I’m a child life specialist. My job is to help other families through trauma and loss. I have sat across from hundreds of parents and siblings and helped to deliver bad news. Offering encouragement and helping families find peace is what I’m trained to do. But it does not make my reality any easier.

In some ways, it makes it harder because I know what to expect. I know that the depth of my pain hasn’t been reached yet. The thing is, it’s really hard to live when you are dying. This is as true for the caretaker as it is for the patient. Because truly living in the moment requires you to acknowledge that there may not be another moment and that you can’t get this time back.

But that is a lot of pressure to squeeze beauty out of every moment when all your loved one wants is for things to stay normal and to pretend that this fucked up thing that is cancer doesn’t exist. But it does. And there’s no hiding it when you want to make plans but you can’t predict how your loved one will feel that day.

On a good day, you want to shoot for the moon and live it up. On a bad day, the littlest things become seemingly impossible. And then comes the mental scolding of why did we get so ahead of ourselves. We “should have known everything can change on a dime.” We kick ourselves for planning too far in advance.

But how can we not when we need things to look forward to? We need that goalpost to be set as high as possible because those are the moments that keep us going. Those are the memories we crave and long for. We risk utter disappointment for the chance of a brief reprieve from reality.

Imagine all the things we want to do in life suddenly having to be pushed up on to an accelerated timeline. Now or never.

Some people romanticize the idea of living for the moment, but there is nothing romantic about it when you are 37 years old with metastatic breast cancer and have no other choice. I want to give my sister the world. I want to cram a lifetime of memories into months. But the constraints of every day responsibilities and realities make this an uphill battle. It doesn’t mean I’ll stop trying. But it does mean there are limits. And that is just one of the many major frustrations of living on borrowed time.

Another is the guilt. It feels selfish taking these trips together and hoarding all these memories when other family members deserve this time too. But I can’t plan for everyone else. The pressure to pretend to feel good when she doesn’t is exhausting. I try to make it clear to my sister that with me she doesn’t have to pretend. She still does so out of her own stubbornness and attempt to protect me. But to a lesser extent.

There are no words that need to be said when she is not feeling well. I always know, and I’m strong enough to hold that information. I don’t need things sugarcoated because I know too much already about what this beast is doing to her body. Sugarcoating things makes me angry. It’s okay for her to say she feels like shit. It should be acknowledged. She should be allowed to live truthfully and to say what we are all thinking. This just fucking sucks.

People often refer to metastatic cancer as mets. But mets sounds cute and sweet. Metastatic is anything but that. It’s a fucking cowardly beast that would be invisible if not for the giant tumor. I want to wrestle it out of my sister. Strangle it to the ground. But I can’t. I keep going back to the same thought of why can’t she just take half of my liver? Like a lizard tail, the liver is supposed to regenerate. I know it’s not that easy, but I wish it were as simple as me just giving part of my body to make hers better.

I have googled article after article trying desperately to find some obscure cure her doctor may not have heard of. Hours looking into that one Facebook video of the study with cancer cells that shrunk in hours! I have bought all the teas and expensive mushrooms I can find on the Internet. You know you’re desperate when you have a $50 bag of dried mushrooms in your Amazon cart.

For now, I know my sister will rally like she always does and face the next day with a bravery that is unworldly and usually only seen in movies. Random acts of kindness from friends and strangers will continue to surprise us and keep us afloat as she fights to navigate the unimaginable. And the almost daily certainty of the absurd will make us laugh. People who say the absolutely wrong thing. A comedy of errors with insurance, scans, a flurry of disability paperwork, medical records, and a wide spectrum of well-meaning people to complete assholes.

It would almost be funny if it weren’t so sad.

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