Hydrocephalus Awareness Month Post

Today is thirtieth day of Hydrocephalus Awareness Month and today I want to say thank you to those who have read and continued to learn, and say thank you to those who have learned about this month and what Hydrocephalus is. Yes, I will always have it because there isn't a cure, and yes I'll always take medication because of my seizures which I haven't had since 2010 but I also have epilepsy and most people don't see me with it or they don't see the learning disabilities but I have them. The thing I want to share as the last part to end the 30 days of September being Hydrocephalus Awareness Month, is this. Hydrocephalus Matters , It always Matters and thanks for letting me share with you.

There Is No Cure

• There is no medical therapy to treat hydrocephalus. The only effective treatments are surgical.
• While many people are helped by surgery, many more need further operations to stay well. Of the nearly 40,000 hydrocephalus operations performed annually (one every 15 minutes), only 30% are the patient’s first surgery to treat hydrocephalus.
• The medical costs for hydrocephalus are over $2 billion per year, yet the National Institutes of Health (NIH) invests less than $8 million per year in hydrocephalus research.

There Is a Crisis in Diagnosis

• A recent study estimates that 700,000 older Americans may be living with normal pressure hydrocephalus (NPH). This disorder often goes undiagnosed and untreated, with an estimate that up to 80% of cases remain unrecognized.
• Of the estimated 5.2 million individuals diagnosed with dementia, 5% are believed to actually have NPH, which is treatable.
• Accurately diagnosing adult hydrocephalus would save Medicare in excess of $184MM over five years.
• Hydrocephalus also goes undiagnosed and untreated in younger adults, leading to substantial workforce loss and health care costs.

There Is a Crisis in Access to Care

• Doctors are sometimes understandably reticent to take on complicated hydrocephalus cases, particularly in adults, because little is known about the disorder. We don’t always know what causes it, and we don’t yet know how to make these people well.
• There are fewer then ten centers in the U.S. specializing in treating adults with hydrocephalus.

More Effective Treatment Is Needed Now

• Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and no progress toward prevention or cure.
• Research is essential. At the very least, we need better treatments, with more positive long-term outcomes, and diagnostic tests that are accurate, cost-effective, and noninvasive.

Hydrocephalus Awareness Month Informational Post

Today is the twenty ninth day of Hydrocephalus Awareness Month and today I thought I would quickly share something from a different Hydrocephalus Group  on something they wrote that talks about Hydrocephalus because I feel it's important we continue to learn about it. So here is the title for this topic: September is Hydrocephalus Awareness Month - Recognize Potential Signs of Hydrocephalus. Now here is the rest of the topic: Hydrocephalus can cause permanent brain damage, so it’s important that you recognize symptoms of this condition and seek medical attention. The condition is more common in children, but it can happen at any age.
Early signs of hydrocephalus in infants include:
bulging fontanel, or soft spot on the surface of the skull
a rapid increase in head circumference
eyes that are fixed downward
seizures
extreme fussiness
vomiting
excessive sleepiness
poor feeding
low muscle tone and strength
Symptoms or signs that affect toddlers and older children include:
short, high-pitched cries
personality changes
changes in facial structure
crossed eyes
headaches
muscle spasms
delayed growth
trouble eating
extreme sleepiness
irritability
loss of coordination
loss of bladder control
larger than normal head
trouble staying awake or waking up
vomiting or nausea
seizures
problems concentrating
Symptoms in young and middle-aged adults include:
chronic headaches
loss of coordination
difficulty walking
bladder problems
vision problems
poor memory
difficulty concentrating
Normal Pressure Hydrocephalus (NPH)
This form of the condition usually begins slowly and is more common in adults over the age of 60. One of the earliest signs is falling suddenly without losing consciousness.
Other common symptoms of Normal Pressure Hydrocephalus (NPH) include:
changes in the way you walk
impaired mental functions, such as memory problems
trouble controlling urine
trouble controlling stools
headaches

I hope this helps you and I can not wait to share more tomorrow. This Month Matters. It always does.

Hydrocephalus Awareness Month Video Documentary Post

Today is the twenty eighth day of Hydrocephalus Awareness Month and I will be sharing my senior project video I made in 2013 because I had to do one in order to graduate. I made this documentary with my brother and three older sisters. I am the youngest of my family. This video tells you a little bit more of what I had to go through growing up. I hope that as you watch today's video you'll be inspired but also learn a little bit about myself and why this month is important to me. I also had made this documentary because I wanted others to know they were not alone. https://www.youtube.com/watch?v=slezNrN6jLs September is Hydrocephalus Awareness Month and It Matters. It always Matters. I hope that you continue to learn and I hope you have learned a lot so far. I hope that I have helped you all in someway, learn about a topic that it's important and needs to be known about.

Hydrocephalus Awareness Month Story Post

Today is the twenty seventh day of Hydrocephalus Awareness Month and today I would love and like to share a story with you about how I went to rally for medical research. I had gone to a rally for medical research in Washington D.C. for Hydrocephalus and for other diseases that don't have cures. On the first day, they talked about training and what was going to happen for the rally day kickoff on the second day. Later that day, we had a reception in the Kennedy Caucus Room which was very cool. I got to meet with a girl who had the same heart problem as me, and even got to see miss America. On the next day, I got to meet with some congressmen which was really cool because I got to meet with David Joyce, I had met with Brad Couts, Sherrod Brown, and others that couldn't make the meetings. Then on the third day, we didn't have any more meetings so we got to relax, and on the fourth day, we went to dinner, with my aunt, and I got to meet two of her friends and got to see one of her friends that I had already met when I was in Washington D.C. for my 7th and 8th grade trip from a long time ago. Next on the final day, we had left Washington D.C. and drove to come home. Finally, we had made it home and I was glad to be back, so that I could share what it was like to be in D.C. with my family and friends. Also I was glad that I got to do something like that, because before we left to come home that day and arrived home, I met this adorable little boy named GianCarlo and I was very happy to know that my video I made for my senior year of high school has inspired so many kids, teens, and even families. September is Hydrocephalus Awareness Month and it matters. This is why it always matters to me, because I want to feel and I would like to know that I'm helping others and their families learn about Hydrocephalus. I want them to know that they're never alone in this. I want them to know that their doctors, their family, and friends care, and that God cares, because none of them will ever turn you away. God isn't going to turn you away and he certainly won't stop supporting you in anyway possible. I love God and Jesus because Jesus is God's Son, and God sent His Son to die on the cross for our sins, so that we could have everlasting life. So you see, no matter what, God is with us through whatever struggle we go through in life.

Hydrocephalus Awareness Month Article Post

Today is the twenty sixth day of Hydrocephalus Awareness Month and I will be sharing an article that the Hydrocephalus Association had posted. Now this article had been done awhile back. Although I want to share it again because I feel people like me need to read it, but also for the parents out there to know that their children are never alone in this world. https://www.hydroassoc.org/normal-on-the-outside-a-teens-journey-with-hydrocephalus/ Here is a link to that article. I hope that as you continue to learn about me and about Hydrocephalus, you'll understand why this month is so important to me. It's like I've mentioned before, I don't do this for fun or for the comments or the likes. I do it because I want to try my best and help people learn about Hydrocephalus. September is Hydrocephalus Awareness Month, tell someone and have them tell others about it as well. Continue to help spread awareness.

Hydrocephalus Awareness Month Video Post

Today is the twenty fifth day of Hydrocephalus Awareness Month and I want to share and explain to you the different types of Learning Disabilities by sharing a video with all of you that talks about just that. https://www.youtube.com/watch?v=yG_xSBsFMPQ Now I also want to share another video that shows and talks about famous people with Learning Disabilities. https://www.youtube.com/watch?v=xoeZAXUZbqQ I hope that as you watch today's videos you'll learn from them and you'll understand more about different types of disabilities and what people like me go through. This month is very important to me because I want to do the best that I can to help educate those on Hydrocephalus. I hope that as you continue to learn that you'll understand why it is important to learn about Hydrocephalus. September is Hydrocephalus Awareness Month and It Matters To Me and To Others. I know that this post might be a little bit shorter than I normally share but that's okay. I know it's not about how short or long the post is, it's about how I help you by educating all of you on a topic that is so important to learn about because if we don't learn about it then there would be no point to educate and if there was any point to educate, then there would be no reason to learn and if there wasn't any reason to learn then there wouldn't be much to really teach people, and if we couldn't teach people then everyone in this world wouldn't know anything or what went on. So my point in saying of this is that I want you to know because I want you to see and read on how important this month and this topic is.

Hydrocephalus Awareness Month Fact Photo Post

Today is the twenty fourth day of Hydrocephalus Awareness Month and I want to share a photo that I hope will help you learn more about why the month of September is important to me. I hope you'll learn something new. This photo gives you three facts on Hydrocephalus and I hope that as you read them that you will learn from them because September is Hydrocephalus Awareness Month and It Matters to me and to others who are living with it. Help spread awareness by telling others about it. 

Hydrocephalus Awareness Month Photo Post

Today is the twenty third day of Hydrocephalus Awareness Month and today I'm going to share a photo.In this photo as you can see it says Keep Calm It's only hydrocephalus. Well yes that maybe true but for me I feel like for those who just found out about it that it can be pretty scary. Here you have a condition that stands for water on the brain, with no cure but treatment for a shunt that requires brain surgery to have a shunt put in, to help relieve the pressure and drain the extra fluid. I believe for any parent that knowing their child or someone they loved that had been diganosed with a unknown and uncommon condition could be really scary because you have to learn about it and you have to go through knowing how to help the person you're caring for, and you have to find doctors that are going to help you and treat you, so that they can make sure the shunt is working properly. September is Hydrocephalus Awareness Month and It Matters, It always Matters. Tell Someone. This is something that people should know about, not sometimes but all the time. It should be common. 

Hydrocephalus Awareness Month Interview Post

Today is the twenty second day of Hydrocephalus Awareness Month and today I will be sharing an interview that I have created with my older sister Ashley.  I decided to interview my sister Ashley, because she is familiar with what I went through growing up. So I am going to post some of the question and answers we have done so far. Me: Q. How would you say learning about Hydrocephalus has impacted you? My sister: A.Seeing how you live and learning about others who live with hydrocephalus has made me aware of the challenges you face. Me: Q. What is one thing you learned about it that you didn't know before? My sister: A.Pretty much nothing. I have been around it for 25 years. Me: Q. If you were someone who moved into a new place and you met a family who had a child with Hydrocephalus and you didn't know what it was, how would you try to learn about what the condition was? My sister: A. I would ask the family or research online. Me: Q. When you first found out that I had hydrocephalus was it scary or were you not too afraid? My sister: A. not really afraid, didn't know what anything meant as I was 12 years old. Me: Q. If a kid or your own came up to you and asked you to explain to them what hydrocephalus was, how would you explain to them what it was? And would it be easy or hard to explain? My sister: A. Hydrocephalus is a condition where your body produces too much fluid in your brain which causes it to swell or other problems. Many people have surgery to get a shunt put in. A shunt is a device that helps the brain drain the extra water. easy. Me: Q. What do you think are some of the biggest challenges people like me face? My sister: A. Aside from health concerns, people who don't know you might not understand you, making friends and finding others who can share in your journey. Me: Q. Why do you think some people or others like me always think there is nothing wrong? Meaning why do you think they think or others like me haven't gone through any struggles? Would you change that by explaining to them my situation or would you not say anything? My sister: A. I think changing people's perception starts with education. I think people think there is nothing wrong with you because you seem healthy and well. It would be rude for someone to ask you what is wrong with you. Me: When I typed that question in my head, I was trying say this:Q.  Do you think those who seem and see that I am healthy and well, that even though I've been through a lot and still go through many things, that you would change the situation by explaining to them that even though I seem healthy and well, I still go through something everyday, even though they can't see it? Me: A. For those who see me as healthy, well, and smiling a lot of those people may not always think anything could be wrong. They don't see my Hydrocephalus or disabilities because they're invisible. Now when I say invisible, I mean you may not be able to see my learning disabilities but I have them. You may not be able to see everything I go through, but I deal with it and don't give up. You may not be able to see my Hydrocephalus, but I have it. You can feel my shunt and you may not be able to see it but it's there. You may not be able to see a lot of things that I'm sure my mom could tell you about but it's there. I hope that as I continue to type this response to close out something I decided to differently for today's post that you will have learned something new, that you will continue to understand why this month is so important to me. I wouldn't change my response for the last part for anything because it was what was on my heart, and it is what I felt. I know there are people who may not always understand the way I think, or the way I see things and that's okay. I know that God created me in His Image and He made me this way for a reason. I know He has a plan for my life. September is Hydrocephalus Awareness Month, tell someone. Let them know that this month is important. Let them know why it is is important to learn about Hydrocephalus. I hope to share something new tomorrow but until then, I hope you've enjoyed reading what my sister has had to say, along with my own responses as well.

Hydrocephalus Awareness Month Story Post

It is the twenty first day of Hydrocephalus Awareness Month and today I am going to share a link with you of somebody's story from the Hydrocephalus Association website. I feel as though this is important because I feel as though some stories I read about others living with Hydrocephalus, parts of their stories are telling mine, even if it isn't. I would now like to share this story with you. https://www.hydroassoc.org/there-are-a-million-hydrocephalus-stories-this-is-the-story-of-tracy/ . A little fun fact, I became friends with this person on Facebook. Another fun fact, I had reached out to her, after I read what they had posted. I hope you enjoy reading her story as much as I did. I hope that as I continue to write, share, and post that you will continue to learn more and more about why this month is so important. I know that today's post may be a little shorter than what I have written about where they usually are long, but that's not what matters. What matters is that you learn from them, you tell others about why it's important to learn about a condition that isn't common. September is Hydrocephalus Awareness Month and It Matters. Why does it matter? Well because I'm living it and I will always live with it. Why is that you may ask? Well because the only treatment is to have brain surgery, which requires a shunt having to be put in. I can not wait to share more with you tomorrow, but until I hope that you enjoy reading what I have shared with all of you today. I hope that you will want to continue to learn more about Hydrocephalus everyday. Let somebody you know that Hydrocephalus Matters all the time, and not just for September. Help spread awareness, and teach others about a condition that they may not have heard of so that they too can share about it and educate others about it as well. Hydrocephalus needs to be known, and others need to hear about it.

Hydrocephalus Awareness Month Post

Today is the twentieth day of Hydrocephalus Awareness Month and I thought I would talk about two different kinds of shunts. The first one being a VP Shunt and the second one being a VA Shunt. Now you might think to yourself what is the difference between them? You might think to yourself, well are they just the same? Isn't a VP Shunt and A VA Shunt the same and not different from another? To answer those questions I would like to share one more thing, so that it helps you learn the difference of these two shunts that you see in this photo. Ventriculoperitoneal (VP) Shunt. VP shunts are the most common type of shunt for draining excess CSF. These shunts generally contain a pressure-sensitive valve that releases CSF once the pressure reaches a certain level  VP shunts, a catheter is inserted into the ventricle with tubing tunnelled subcutaneously down the thorax and then further tunnelled into the peritoneal cavity where the CSF is absorbed. Now I would like to share the definition of what a VA Shunt is. VA shunts are less common than VP shunts and the only difference between them is that rather than finishing in the peritoneal cavity, the VA shunt finishes in the right atrium of the heart and CSF is absorbed via our blood stream. Now before I close out today's post, I would like to share the link to the website that I got the definitions about the two shunts I have shared in the photo. In the link I will be sharing, it will give a definition of a shunt that I didn't talk about tonight, and a little more about Hydrocephalus as well. I hope that as you continue to read, you'll continue to learn and be educated of why this month is so important to me. Here is the link. https://www.ausmed.com/cpd/articles/hydrocephalus-and-shunts . September is Hydrocephalus Awareness Month and It Matters To Me and to those living with it everyday. 

Hydrocephalus Awareness Month Photo Post about shunts

Today is the nineteenth day of Hydrocephalus Awareness Month and here is what I would like to share and talk about with all of you today.The photo you see is what a person like me has. This is what a shunt looks like and the shunt is that size. Now I would like to share another photo for you. Now the second photo show how the shunt is placed and you can see where the extra tubing is placed. I wanted to share these two photos with all of you because I feel as though it was important to share and when I do these posts, I want to try and make it so that you're learning about something different and new each day. I want you to learn how important this month is to me and others like me. I want you to know how important it is to learn about Hydrocephalus and why we should tell others about it, and why it's important to spread awareness this month. I can not wait to share more tomorrow, but until please enjoy reading today's post and I hope that you've learned something new.

Hydrocephalus Awareness Month Post

Today is the eighteenth day of Hydrocephalus Awareness Month and before I share anything like a quote, photo, or video with all of you, I want to share what I'm feeling. I want to share that first because I feel like it's important. I watch videos of two people who have autism, and then I see this other video and multiple videos who have a little girl who has gone through so much, and when I see this and I look at how much these three people from different states, and how much their life is like, I know I am wonderfully made, a child of the one true king, blessed, to not have a lot of the severity of their conditions, because some of can speak but some not. When you think of that you have to wonder how is it possible that somebody who has autism can't speak hardly at all? How is it possible for a child to have cancer? Well, when we don't have the answers to these types of questions, then we have to know and trust that God made us differently and uniquely in our ways, and because He made us that way, we have to also know that He has a plan and purpose for our lives and nothing will change that. I would like to now share a video on Hydrocephalus. https://www.youtube.com/results?search_query=Hydrocephalus . I hope that as you watch the video you will learn from it and be educated. I would like to now share a photo that shows a before and after photo of a shunt. Here is the photo and as you can see that before the shunt is placed, there is the extra cerebal spinal fluid otherwise known as CSF. Now if you look at the after photo, you'll see that there is less of that, which means that the shunt is doing it's job to help someone who is living with Hydrocephalus not have so much fluid on their brain. Hydrocephalus is so important to learn and be educated that I hope people will want to continue to learn about this topic. I want them to learn and see why it's important to me. I would now like to share a quote with all of you.Here is the quote. I hope that you will continue to learn and be educated this month because September is Hydrocephalus Awareness Month and It Matters to me and to others living with Hydrocephalus. Hydrocephalus is not curable but it is treatable. The treatment for it requires a shunt, which then requires brain surgery for it to be put in.

Hydrocephalus Awareness Month Story and Photo

Today is the seventeenth day of Hydrocephalus Awareness Month and I would like to share a little story, along with a photo.  My mom told me that this was when I had my external shunt put in. I have not had my shunt replaced since my tenth birthday. Now here is the photo. Hydrocephalus Matters. Learning about this month matters. I want people to know that this is so important because if I haven't mentioned it and if I did, I want to say it again because another thing that can happen with people living with Hydrocephalus, is they can pass away from it. I am a survivor who is still living with Hydrocephalus just like many others. Although I continue to pray for those who have already passed away, and pray that their families and friends find comfort and peace and closure through it all, as it is never easy to lose a family member to anything. We need to make Hydrocephalus known and we need to let people know that even though it isn't curable that Hydrocephalus is treated with a shunt that requires brain surgery to have the shunt put in. I want others like me to know they're never alone in this world, and if they need somebody to talk to then there are people that will always take time to listen to you. I hope that as you continue to learn about Hydrocephalus, that you learn what it is all about. I hope you'll continue to learn why it's important to know about Hydrocephalus. I hope you'll find ways to spread awareness. September is Hydrocephalus Awareness Month and It Matters. It always Matters. Tell someone you know, so they will want to learn and tell them how it is important to those living with it and why they should help make it a well known condition that other people can know about too.

Hydrocephalus Awareness Month Post about Invisible Illnesses

Today is the sixteenth day of Hydrocephalus Awareness Month and I would like to talk about invisible illnesses. There are many invisible illnesses and I would say Hydrocephalus fits into that category. I would like to share some quotes that talk about all the different illnesses that are invisible. This photo describes one of the many things that I believe to be true.  Here is the second photo. Now people who live with invisible illnesses also have disabilities and by the photo there are the ones that you can see and the ones you can not see. I have learning disabilities that people from time to time can not see, so some people think I don't have them. There are people who can't tell that I have epilepsy but I have it. I have Hydrocephalus even if you can't see it, but can feel that I have a shunt but still unable to see it. Invisible Illnesses are real. People go through many different struggles. I'm not ashamed of my story because I want to continue to inspire others with my story which is my testimony. I want others to keep on knowing they're not alone in this world. It is frustrating for me when I can't explain what I've been through growing up because I don't remember most of that part unless my parents tell me. I was too little to understand everything going on during that time. I wanted to share these quotes from google because it's important to know what people like me go through because if they didn't then there wouldn't be a need to share anything. More people who don't have Hydrocephalus or Epilepsy have different things going on, and different invisible illnesses that people can't see. I felt like this topic tonight for this particular post, was important to share today.

Hydrocephalus Awareness Month Photo Post

Today is the fifteenth day of Hydrocephalus Awareness Month and today I would like to share a photo with all of you. As you can see what the photo says, I want all of you to think of those besides myself who go through more brain surgeries and think about how blessed you are that you don't have to worry about going through so much as a person with Hydrocephalus does. I mean if we really think about it those who go through so many brain surgeries have to continue to live with a condition but it's not bad, that they have to live with because no one is ever alone. Jesus is always with us and our family and friends are always there too, supporting us and being there for us as well. I don't know what else to write about the photo at this time, but I would like for those of you who don't have Hydrocephalus and for those who do, to just pray for one another. Pray that for those who go through surgeries will have a good recovery and those who don't go through that kind of surgery, pray that whatever struggle you yourself maybe going through will be better the next day. I can't wait to share something tomorrow, but until then please enjoy today's post. Hydrocephalus Month Matters to Me.

Hydrocephalus Awareness Month Article Post

Hi, as you all may have noticed I didn't share anything yesterday and there is a reason for that. Well, I had gone with three of my family members to a christian concert called Point Fest at Cedar Point. So I am going to be posting the fourteenth Hydrocephalus Awareness Month Post, along with today's post. So stay tuned for the second post as well. I would like to share an article with all of you that was posted from the Hydrocephalus Association. I had submitted to them an email on how Hydrocephalus impacts my life. I hope that you enjoy reading day 14 of Hydrocephalus Awareness Month as I know it was yesterday, but again I didn't have time to post it at the concert so it is going to be on here today. I would now like to share the article with all of you. www.hydroassoc.org/how-hydrocephalus-has-impacted-my-life-one-teens-story/?fbclid=IwAR2PZ9_Ecn1tlUcmrkSbFMAkRkM3k99xH6aXu57cXKeSmLtggOo2NfRE4dQ Here is the article. I hope that as you read it, you will learn from it and learn a little more about me as well. I hope that if you're a parent and you're just now reading some of these posts, that they're helping you learn about your child with Hydrocephalus or Epilepsy or Cerebral Palsy. It is my hope for you guys to learn about why this month and this topic is important to me, and it is important to me that I help educate all of you about what Hydrocephalus is, if you don't know it. I hope that in my next post you will continue to learn even more because I'm always happy with writing these posts for you. It makes me feel good that you're knowing how much you're learning about something that isn't even common. I hope to write again soon but until then please enjoy the 14th day of Hydrocephalus Awareness Month article and post. September is Hydrocephalus Awareness Month and It Matters.

Hydrocephalus Awareness Month Post

Today is the thirteenth day of Hydrocephalus Awareness Month  I thought I would quickly share something from a different Hydrocephalus Group that I read a long time ago, and  something they wrote that talks about Hydrocephalus because I feel it's important we continue to learn about it. So here is the title for this topic: September is Hydrocephalus Awareness Month - Recognize Potential Signs of Hydrocephalus. Now here is the rest of the topic: Hydrocephalus can cause permanent brain damage, so it’s important that you recognize symptoms of this condition and seek medical attention. The condition is more common in children, but it can happen at any age.
Early signs of hydrocephalus in infants include:
bulging fontanel, or soft spot on the surface of the skull
a rapid increase in head circumference
eyes that are fixed downward
seizures
extreme fussiness
vomiting
excessive sleepiness
poor feeding
low muscle tone and strength
Symptoms or signs that affect toddlers and older children include:
short, high-pitched cries
personality changes
changes in facial structure
crossed eyes
headaches
muscle spasms
delayed growth
trouble eating
extreme sleepiness
irritability
loss of coordination
loss of bladder control
larger than normal head
trouble staying awake or waking up
vomiting or nausea
seizures
problems concentrating
Symptoms in young and middle-aged adults include:
chronic headaches
loss of coordination
difficulty walking
bladder problems
vision problems
poor memory
difficulty concentrating
Normal Pressure Hydrocephalus (NPH)
This form of the condition usually begins slowly and is more common in adults over the age of 60. One of the earliest signs is falling suddenly without losing consciousness.
Other common symptoms of Normal Pressure Hydrocephalus (NPH) include:
changes in the way you walk
impaired mental functions, such as memory problems
trouble controlling urine
trouble controlling stools
headaches
I hope this helps you and I can not wait to share more tomorrow. This Month Matters. It always does.

Hydrocephalus Awareness Month Story Post

Today is the twelfth day of Hydrocephalus Awareness Month and I would like to just take time to share another story about what I went through growing up. Today, I would like to share a photo and something that tells more about the photo. So first I am going to tell you more about the photo, then share the photo with you. This picture was taken in June of 1996 after I was life flighted to the Cleveland Clinic. I had a seizure that was resulted in brain damage because I had so much swelling in my brain that the wrinkles were completely smooth. The doctor said if I gotten there 15 minutes later I would've had severe brain damage and 30 minutes later would have resulted in me not surviving. After this picture was taken an external shunt was placed to monitor my fluid... and a few days after that I had another surgery to be permanently shunted. I hope you will continue to learn why this Month is so important to me and to others, and why it matters. The people in the photo with me are my three older sisters and older brother. Here is the photo I would like to now share with you, since you know a little bit about it, along with knowing who the people are in the photo with me. So as you can see this month matters so much to me because I want to help not only share what people like me go through, but I also want to help educate people on Hydrocephalus and share my story which is my testimony as well, so you can get to know me a little better. If someone were to look at me and not be able to see any learning disabilities, well just because you can see them, that doesn't mean I don't have them because I do. I will always have Hydrocephalus because there isn't a cure. So many people may not realize that when they're living their life healthy as can be there are so many out there that are going through so much more than me because they have a lot of other problems that are very severe than what I am going through. September is Hydrocephalus Awareness Month and It Matters, tell somebody that you know about it, so they can share and tell others that they know about it too. We need more people all over this world to know about Hydrocephalus, so it's not just something that is left as a unknown and uncommon condition. Let's make it a well known and common condition that people have heard of and can know about. It can be pretty scary if anyone is first diagnosed with Hydrocephalus or anything really because you don't know and are unsure what kind of treatment or help you will need. That being said, Hydrocephalus has only one treatment and that is having a shunt put in. I really do hope that as I been doing these posts that you're learning from them. I can't wait to share something with all of you tomorrow, but until I hope you enjoy reading today's post and will learn a little more of what I had to go through growing up. For me this month is important but the topic I am writing about, is very important.

Hydrocephalus Awareness Month Post and Remembering Nine Eleven

Today is the eleventh day of Hydrocephalus Awareness Month and before I share anything about it, I want to share a photo so we can be reminded of what happened on this day. This photo should be a reminder to all of us that those of us still on this Earth, are very fortunate and blessed to be with our families. We don't know how much hurt and pain these families who went through losing a loved one on this day must feel today. The memories they must have coming back to them and remembering saying goodbye to them over the phone as this photo mentions as well. We won't ever know what someone like that must be experiencing or feeling. Today marks eighteen years since it all happened. So as I share this with all of you, we should never forget what happened and this is such a sad thing for those who are remembering where they were and watching it on the news. Let us never forget those who have  passed and let us pray for the families who lost their loved ones in this tragedy. I would now like to share two videos for today's Hydrocephalus Awareness Month post. https://youtu.be/fJatSLilfXI Here is the first video and now I will share the second video with you. Here is the link to the second video which I hope you will learn from. https://youtu.be/JLNI2upLi7I I hope that you will also learn from the first video too as it is important to learn about Hydrocephalus. I do hope however that you will never ever forget about what happened today either, because it is just as important as it is when I do these posts for you. What happened on Nine Eleven is very sad and very tragic and it shouldn't be forgotten, because it's an important of our history, and because of that we should never forget it. I hope you'll take time to pray for those who are hurting, and pray for those who passed due to what happened on this day.

Hydrocephalus Awareness Month Story Post

Today is the tenth day of Hydrocephalus Awareness Month and I would like to finally share the one story I've been talking about in previous posts. When I was in grade school, I was with my aide in the art room, working on school work and dropped my pencil. I had bent down to reach for my pencil and when I got it, and sat back up, I had a really bad headache to the point where I was crying because I didn't feel well. I had my mom come and get me. I think as soon as I got home I took a nap to see if my headache would go away, and of course when I woke up it didn't. That day I had also complained my side was hurting and that pain wasn't going away either. I guess we had gone to the hospital to get checked out, and I think the person to see what was going on, maybe asked my mom if I had a shunt, and I think my mom said yes she does, and they said no she doesn't. My shunt had malfunctioned, with the shunt tubing disconnecting from the back of my head all the way into my pelvis. So, on my tenth birthday I had to have my shunt replaced, and before I had gone to have my shunt replaced I got to pick out a blanket and the blanket I picked was a farm animal blanket that I have still to this day. The farm animal blanket was made by a girl and her girl scout troops and that girl's name was Emily Webber. I can sort of remember that after I was out of surgery that I was crying because I was hurting because my head and neck was turned a certain way and it was stiff. There was a time after I had gotten back to my room that somebody came in and had mentioned that the girl who had helped make the blanket I have was there, being treated for leukemia and asked if I would like to meet her, so I think I nodded my head yes or something, but I'm not so sure. I do know that I got to meet her and I think I even thanked her for the blanket she made. Then she left the room. It's hard for me to remember this kind of story because of all the events that occurred but it's still a neat story in a way because of how I got to meet a girl who had made a really sweet fleece blanket. This month matters to me so much and I am doing this so you can learn from it. I may not have an answer to every question that you may have for me, but what I do know is that I'm trying my best to educate all of you about Hydrocephalus. If you haven't already let someone know about Hydrocephalus. 

Hydrocephalus Awareness Month Photo Fact

Today is the ninth day of Hydrocephalus Awareness Month, and I want to share a Hydrocephalus fact with all of you. The fact shows that with Hydrocephalus it can have Abnormal dilatation of the cerebral ventricular system. It shows how, Hydrocephalus should be differentiated from disorders producing ventricular enlargement secondary to cerebral atrophy. Finally it is, Classified into: Communicating Hydrocephalus, and Non communicating Hydrocephalus. Yes, I know you could just read below of what I just mentioned but in case it was hard to read but this way you can have both to remember how much you're learning something new each day. Hydrocephalus Awareness Month learn from it, help others learn about it too. I also have a challenge for all of you. If you know someone with Hydrocephalus, then wear blue for them. If you don't know anyone who has it, still wear blue for them anyway. Finally, if you know someone who had it, because they passed away from it, wear blue in there honor. September is Awareness Month for Hydrocephalus, tell somebody.

Hydrocephalus Awareness Month Photo Post

Today is the eighth day of Hydrocephalus Awareness Month and I am going to be sharing a photo that shows a little bit of what I've been talking about these last few days. So here is the photo. This month is so important to me and to all the others living with Hydrocephalus. This photo is important to me because of what it says and because it has part of the scripture from Philippians 4:13. All I ask is that you continue to learn from this month, but everyday because right now this is incurable and that doesn't stop anyone from doing what they love because when it comes to having brain surgery
I have never given up and I don't plan to either. This month I have been able to share new things with all of you that I hope have benefited you and helped you. I'm not alone in this journey and whatever you're going through, whether it be the same thing I am going through or not, you're not alone either. September is Hydrocephalus Awareness Month, and if you're just now coming into reading these posts and wondering how can someone who is like me still have the time, to help educate on what I'm going through, or how can someone like me even care enough to want to write and post different things about struggles I'm facing? Well to answer that question it's because I care so much about this topic and I'm already going through it all, that I want others who know and don't know, want to learn more about what I and others have to go through, so that they can tell someone about it as well.

Hydrocephalus Awareness Month Video and Photo Post

Today is the seventh day of Hydrocephalus Awareness Month and I would like to tell a little about what I had to go through growing up. Although, I feel that the best way to do that for the most part, is to share my senior project video with all of you that I had to do in order to graduate high school. This video is something I did in 2013. I wanted others to know they were not alone. I would like to share my video with all of you now. https://www.youtube.com/watch?v=slezNrN6jLs&t=28s I hope that as you watch this video today or this evening, that you'll learn from it and maybe even be inspired by it too. I hope that as I share something different with you each day that you'll learn what people like me go through. I would like to share one more thing with all of you, which is a photo with a fact on Hydrocephalus. This month is so important, and it's not something that should be tossed aside or forgotten. This month is something that is so important to know about because it's like I've mentioned in previous posts. If no one educates people then who will let others know? Well the answer to that question, would be no one would, and if no one did, then no one would want to learn about it. If no one wanted to learn about it, then that means it continues to be an uncommon and unknown, along with rare condition that isn't like those with other conditions or illnesses that people can see. We need to let others and help them know that Hydrocephalus is real and it very much exists if you can't see it. September is Hydrocephalus Awareness Month and It Matters. Do you see the percentage in this photo I've also shared with all of you? Think of that for a moment. Think of how a baby who could seem perfectly fine, could go through something like that. Think of how the parents of that baby who is innocent, and not knowing yet the condition they are going to live with, because of no cure for it. Well Hydrocephalus Awareness Month is more than just spreading awareness to me, it's important because I'm living with it, and because of that, I want people like you to be educated about it and not think that it is something you need to be worried about catching because some people think that other things like asthma would be contagious but I want to assure you that neither of the two are. Well, until tomorrow, I hope that my video helps you if you're a parent, or not and I hope the photo helps educate you. No one is alone in this, and everyone will help support one another no matter what.

Types Of Hydrocephalus Awareness Month Post

Today is the fifth day of Hydrocephalus Awareness Month, and I wrote about how people who live with Hydrocephalus can also live and have Cerebal Palsy in a different post. Well today I want to share about how their are different types of Hydrocephalus. Yes, I can kind of guess what you're thinking isn't there only one type of Hydrocephalus? How could there be different types of Hydrocephalus? Well unfortunately there are different types of Hydrocephalus and Hydrocephalus can happen at any age.  All of this came from the site called, https://ana-neurosurgery.com/areas-of-expertise/hydrocephalus/types-of-hydrocephalus/ . I hope that you continue to learn more about Hydrocephalus and why this month is so important. September Is Hydrocephalus Awareness Month, tell someone and help someone learn about what people like myself go through. There are two main classifications for hydrocephalus:

• Communicating (or non-obstructive)
• Non-communicating (or obstructive)

Both communicating and non-communicating hydrocephali can be subdivided into congenital (present at birth) and acquired (occurs following birth). Communicating hydrocephalus can also be subdivided into normal pressure hydrocephalus (NPH) and hydrocephalus ex-vacuo.

Communicating Hydrocephalus

Also known as non-obstructive hydrocephalus, communicating hydrocephalus occurs when the flow of cerebrospinal fluid (CSF) is blocked after it exits the ventricles. This form is called communicating because the CSF can still flow between the ventricles, which remain open.

Normal Pressure Hydrocephalus (NPH)

This type only affects people ages 50 years or older. It may develop after a stroke or injury. As opposed to other types of hydrocephalus, NPH develops slowly due to the gradual blocking of CSF drainage, which subsequently causes slow fluid buildup over time. The enlarged ventricles then press on the brain and cause symptoms. These include dementia-like signs similar to Alzheimer’s disease, and walking difficulties that resemble Parkinson’s disease. That’s why the diagnosis is often problematic. The good news, however, is that unlike those conditions, NPH can be resolved.

In most cases, the cause of NPH is undetermined. However, NPH can occur due to bleeding in the brain following a head injury, stroke, brain tumor, meningitis (an infection of the tissue surrounding the brain), or even following brain surgery.

Since diagnosis is complicated by the fact that many people assume the symptoms of NPH (difficulty walking/gait disturbances, cognitive challenges/mild dementia, urinary urgency or incontinence) are related to aging, it is important to recognize that those symptoms may be part of NPH, which is a treatable condition.

Hydrocephalus Ex-Vacuo

Hydrocephalus ex-vacuo occurs from brain damage caused by stroke or injury. In this condition, there may be an actual shrinkage of brain substance. Although there is more cerebrospinal fluid (CSF) than usual, and the ventricles are enlarged, the CSF pressure may or may not be elevated in hydrocephalus ex-vacuo.

This dilation of the cerebral ventricles, which is due to loss of brain tissue, is a common result of brain diseases such as luekoystrophies (a group of rare genetic disorders that affect the central nervous system), multiple sclerosis, multiple strokes, Alzheimer’s disease, Huntington’s disease and other related diseases.

Non-Communicating Hydrocephalus

Non-communicating hydrocephalus — also called obstructive hydrocephalus — occurs when the flow of cerebrospinal fluid (CSF) is blocked along one or more of the narrow passages connecting the ventricles.

Causes and Symptoms of Hydrocephalus

Whether communicating or non-communicating, hydrocephalus can be subdivided into two different causal categories:

• Congenital
• Acquired

Congenital Hydrocephalus

Affecting one out of every 1,000 newborns, congenital hydrocephalus is the type that is present at birth. Congenital hydrocephalus is a buildup of excess cerebrospinal fluid (CSF). The extra fluid can increase pressure in the baby’s brain, which then causes brain damage and physical as well as mental problems. Discovering the condition early and treating it quickly can help limit any long-term problems. But long-term effects greatly depend on the cause of the fluid buildup, how bad it gets, and how the baby responds to treatment. Early treatment (before age 4 months) is important to help limit or prevent brain damage. However, congenital hydrocephalus is now often diagnosed before birth through a routine ultrasound. Treatment focuses on reducing the amount of fluid in the brain to relieve pressure.

Congenital hydrocephalus is caused by a complex interaction of genetic and environmental factors during fetal development. One of the most common causes of congenital hydrocephalus is “aqueductal stenosis” (a narrowing of the aqueduct of Sylvius, a cerebral aqueduct). Another common cause of hydrocephalus is a neural tube defect (NTD).

Other Causes of Congenital Hydrocephalus Include:

• Birth defect (such as spina bifida)
• Genetic defect
• Mother’s infections during pregnancy (such as rubella, mumps, toxoplasmosis or syphilis)

Medical Problems Associated with Congenital Hydrocephalus May Include:

• Chiari malformations, an abnormality at the base of the brain where the spinal column joins the skull
• Craniosynostosis, when the bones in the skull fuse together before the brain has stopped growing
• Dandy-Walker syndrome, when the fourth ventricle is enlarged because of partial or complete closure of its outlets
• Hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid
• Vein of Galen aneurysmal malformations, a tangled mass of dilated vessels supplied by an enlarged artery

Symptoms of Congenital Hydrocephalus Include:

• Abnormal head enlargement
• Downward deviation of eyes
• Headache, irritability, nausea, sleepiness, vomiting
• Prominent scalp veins
• Skull bones may feel separated
• Tense, bulging fontanel

Acquired Hydrocephalus

Acquired hydrocephalus develops at the time of birth or at some point afterward. This type of hydrocephalus can affect individuals of all ages and may be caused by injury or disease. The following conditions may cause CSF obstruction and subsequently acquired hydrocephalus:

• Bleeding (hemorrhage)
• Brain trauma (i.e., result of injury)
• Brain tumor
• Cyst (i.e., a fluid-filled sac)
• Infection (e.g., cerebral abscess, bacterial meningitis)

Premature births may be a risk factor for hydrocephalus. Hemorrhaging, traumatic brain injury, and infection are seen in some premature births.

Symptoms of Acquired Hydrocephalus Include:

• Chronic headaches
• Cognitive challenges or complaints
• Difficulty walking/gait disturbances
• Urinary urgency or incontinence

Pseudotumor Cerebri

Pseudotumor cerebri (PTC) is caused by high pressure in the fluid surrounding the brain. Pseudotumor cerebri means “false brain tumor” because it mimics a tumor or hydrocephalus. The difference between PTC and hydrocephalus is that PTC fluid is encased in the extracellular space (located around each brain cell) rather than in the ventricles. In essence, then, the ventricles are compressed with PTC and expanded in the case of hydrocephalus. PTC is often associated with overweight adolescents or sudden weight gain (such as in pregnancy). It is sometimes treated with shunting.