Hydrocephalus Quote

 

Today I thought I would share this quote with all of you because I think it's important to learn about Hydrocephalus but it's also important to not give up in the journey you go through.

Hydrocephalus Awareness Month

 Today is the twenty third day of Hydrocephalus Awareness Month and today I would like to talk about those who have Hydrocephalus. People with Hydrocephalus can get headaches, and I could give you a lot more symptoms, but that's just one of them. People who also have hydrocephalus can pass away from it and those who have it can survive. Many people with Hydrocephalus have had to go to the hospital because of their shunt either quitting, malfunctioning, or having it be infected. A person with Hydrocephalus who has a shunt, of the things I have mentioned about what can happen to the shunt, those things can happen but one thing that doesn't happen is the people who have Hydrocephalus don't quit or give up. Another thing people with Hydrocephalus can have are seizures. So many people don't know what Hydrocephalus is and it's our job to educate them and tell them about it. I like doing these posts because it makes feel good knowing that I am helping someone understand what this month is about and why it's important to learn about Hydrocephalus. I hope that these posts have helped you and someone else learn about Hydrocephalus. I hope that helps you and encourages you to want to learn more about Hydrocephalus. Hydrocephalus Matters. Awareness Matters. People living with Hydrocephalus Matter. There is no cure for Hydrocephalus. The only treatment for it is brain surgery, which requires having a shunt put in. More and more people who live with Hydrocephalus have to go to the hospital to get their shunt replaced. It's also a fact and it's true, because I see it every time from a Hydrocephalus group I follow when they post it, that more people have had more brain surgeries than birthdays. I hope that people will want to learn more about this month and want to know why this month matters. I wrote a song for Hydrocephalus Awareness Month and I feel like this song is good and it is a song that talks about everyone who has Hydrocephalus including me. September is Hydrocephalus Awareness Month and It Matters. Hydrocephalus Always Matters. This Month will always Matter. Awareness will always Matter. People like me who live with Hydrocephalus each day, matter always. At this time I would like to share my title and lyrics of my song that I wrote with you. The title is called A Battle I with other's face. Here are the lyrics: When there's a day I'm feeling down I just keep my head held high. I'm doing good, while others like me are facing a battle. There's no cure for the struggle we face, but we don't have to go through it alone. So I just gotta keep going on with the battle I and others face. If there was ever a time where people like me felt left out, I say to them that you don't have to feel that way, because you're not alone. I try to fit in with other kids, but they don't understand, maybe they would if they took the time to listen why. Sometimes it's hard, but that's ok because there are others that will help you through it all, along the way. Any other time, I'm trying to be strong, but now I know that I don't have to face all of this alone. So when others like me are feeling down, we just have to know and trust that everything will be okay. We have to be strong and have some faith that we'll have God and others too, help us along the way. Our journey isn't over and we'll keep fighting till the end. We might be strong, but you never know how strong you are till be strong is the only choice you have. Being brave is okay, but sometimes you just need someone or a friend that will listen to what you have to say. I am brave and I am strong, but I know that I don't have to fight this battle by myself. No matter how far or where you are, just to let you know that there will always be someone or somebody who cares. The people in your life and mine will always be the ones by your side and never leave, because they are going to support you and I every step of the way. Now there is one part in this song that I used from one of my Hydrocephalus t-shirts that I had gotten from a Hydrocephalus group, who has helped people with Hydrocephalus. I can't wait to share something different tomorrow with all of you, but until then please enjoy today's post about Hydrocephalus.

A Battle I With Other's Face

 With today being the second day of hydrocephalus awareness month, I want to share the title of my song that I wrote and my piano teacher composed for me awhile back, along with the lyrics. Now one of the lyrics in my song came from a t-shirt I got from the Hydro Angels store and Hydro Angels was a non-profit organization that helped people like me and granted Christmas miracle wishes. I had used that quote because I liked it so much. Now I would like to present the title and the title is: A Battle I with others face. Now here are the lyrics: When there's a day I'm feeling down I just keep my head held high. I'm doing good, while others like me are facing a battle. There's no cure for the struggle we face but we don't have to go through it alone. So I just gotta keep going on with the battle I and others face. If there was ever a time where people like me felt left out, I say to them that you don't have to feel that way, because you're not alone. I try to fit in with other kids, but they don't understand, maybe they would if they took the time to listen why. Sometimes it's hard, but that's okay because there are others that will help you through it all along the way. Any other time, I'm trying to be strong, but now I know that I don't have to face all of this alone. So when others like me are feeling down, we just have to know and trust that everything will be okay. We have to be strong and have some faith that we'll have God and others too, help us along the way. Our journey isn't over and we'll keep fighting till the end. We might be strong, but you never how strong you are till be strong is the only choice you have. Being brave is okay, but sometimes you just need someone or a friend that will listen to what you have to say. I am brave and I am strong, but I know that I don't have to fight this battle by myself. No matter how far or where you are, just to let you know that there will always be someone or somebody who cares. The people in your life and mine will always be the ones who will be by your side and never leave, because they are going to support you and I every step of the way. I hope you enjoy reading the lyrics and song, along with its message. Which is even though we are going through and facing a battle, and it's a struggle for those who are facing it, and there is not a cure for it yet, we are all going through the same battle and we're facing it together. We are never alone in this world, no matter what we are going through or what we maybe facing because we have our Lord and Savior Jesus Christ watching over us and protecting us, and we have family and friends who help us and are with us no matter what.

September is Hydrocephalus Awareness Month and it matters.

Interview with Dequan

Q. What was it like growing up for you?

 

A. Hospital Visits, pretty good childhood, after being diagnosed with Hydrocephalus pretty normal.

 

Q. When did you first get diagnosed with Hydrocephalus?

 

A. At Birth and that was in 1997.

 

Q. Did you go through any challenges growing up? If so, what were some of the struggles that you faced?

 

A. Learning how to walk, a little bit of speech and almost everything.

 

Q. Who helped you with overcoming some of the challenges growing up?

 

A. I would say, my mom.

 

Q. Where did you feel that you struggled in school growing up? Did you have any help, or did you manage to do things on your own?

 '

A. Well, elementary I was in special education so I didn't have very much help and then I had an aide to help as needed.

 

Q. Do you have Epilepsy, if so how do you manage having it and do you tell others that you have it?

 

A. I have epilepsy, but it's controlled because I take medication for it and sometimes I do tell others like my mom and people I work with because they do have to know about it.

 

Q. When you share your story with others are you afraid to share it or do you feel comfortable in sharing it with others?

 

A. I'm comfortable because people need to know what Hydrocephalus is, and people need to get educated on what it is.

 

Q. How do others react or respond when you tell them you have Hydrocephalus for the first time?

 

A. Well the first time that I tell them, they don't know what it is, so I have to explain to them what it is.

 

Q. Was it difficult growing up in making and keeping friends or did you find it came easily to you with making and keeping friends?

 

A. I isolated myself from friends, I am very anti social, and so it was hard for me to make and keep friends and I had a lot of doctor's appointments.

 

Q. If you could describe what it's like to share your story with others and what it's like to let others know, what would you say?

 

A. I would tell them, I was born with Hydrocephalus, it's water on the brain and it's not curable. It's my life, there's not much I can do about it.

 

Q. Is it hard to give advice to others if they ask you for it, or do you find it comes easily to you to give advice for when they ask?

 

A. I think it's easy, if they ask for advice because I find it easy and sometimes I get nervous but I understand what they're going through.

 

Q. What do you want people to know about you and your Hydrocephalus Journey? What do you want people to take away from it?

 

A. I want them to take away, I'm strong, I'm confident, it doesn't matter what obstacles I went through, I can do anything I put my mind to.

 

Q. Do you find it hard to understand and process things? If so, how do you find ways to make it easier for you to understand it better?

 

A. Well, I have ADHD as well, so I write things down to process it better, so that I can remember it.

 

Q. Were you ever scared to tell your peers about having Hydrocephalus? If so, why? If not, what helped you make it easier to tell them?

 

A. Well, I wasn't scared to tell them but if they ask then I get scared because I have to tell them it's spinal fluid on my brain, it's excess fluid, and it helps educate them.

 

Q. How has Hydrocephalus impacted you and your life?

 

A. In general, I'm living on my own, I work, I do the best that I can to be positive and not be negative.

 

Q. Who would you say has had a great impact on your life and in your journey?

 

A. Well, I had certain doctors that impacted my life, and they told me that I can do a lot of things. My doctors are guiding me in the right direction.

 

Q. If you could give a piece of advice to someone out there that will read this, what do you want them to know?

 

A. That you can do anything you put your mind to, Hydrocephalus isn't a disability. It can't stop you from what you put your mind to.

 

Q. Finally, how has your journey with Hydrocephalus made you stronger and do you wish there were things that you knew more about having Hydrocephalus growing up to now?

 

A. I think I'm now learning, after going to conference I am learning more about myself than the average person. I learned a lot at conference and I learned that I am more capable of things that I could be doing, I could be driving but I'm not.

20 Powerful Facts About Hydrocephalus

 1. Hydrocephalus is a life-threatening condition that affects approximately 1 million Americans.

2. Anyone, at any age, can develop hydrocephalus.

3. One out of every 770 babies will develop hydrocephalus, making it as common as Down syndrome and more common than spina bifida or brain tumors.

4. There is no way to prevent hydrocephalus and there is no cure. The only known treatment requires brain surgery.

5. Hydrocephalus is the most common reason for brain surgery in children.

6. The most common surgical treatment for hydrocephalus is the implantation of a device called a shunt to drain fluid from the brain.

7. An estimated 50% of shunts in the pediatric population fail within two years of placement and repeated neurosurgical operations are often required.

8. There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year.

9. Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. Dozens of brain surgeries are common and 100 or more is not unheard of.

10. The core technology used to develop the shunt has not changed significantly since the 1950’s.

11. Over 36,000 shunt surgeries are performed each year (one every 15 minutes) and more than half of them represent emergencies.

12. Pediatric hydrocephalus alone accounts for more than 40,000 hospital admissions each year (433,000 hospital days.)

13. The hospital charges for hydrocephalus are over $2 billion per year.

14. Nearly 40% of infants diagnosed with hydrocephalus develop behavioral issues and 20% will develop autism.

15. Since 2000, more than 370,000 U.S. service members have sustained a traumatic brain injury, one cause of hydrocephalus. It is estimated that 14% of those who suffered a severe TBI could develop hydrocephalus.

16. An estimated 700,000 older Americans are believed to have NPH, but often are misdiagnosed as Alzheimer’s, Parkinson’s, or dementia. When correctly diagnosed and treated the patient often can return to full functioning!

17. Accurately diagnosing adult hydrocephalus would save Medicare in excess of $184MM over five years.

18. The Hydrocephalus Association provides free support and education to individuals, families, and medical professionals dealing with the complex issues of this condition.

19. Since 2009, HA has invested over $13 million in research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. Our grantees have gone on to secure over $50 million in additional funding to continue their research.

20. Thanks to HA’s Research Initiative, there are 11 drugs currently being tested that could have a major impact on people living with hydrocephalus.

Hydrocephalus Photo

 

Hydrocephalus photo