Friday, December 29, 2017

Let's Help Make a Difference in 2018





        As 2017 comes to an end, lets reflect back on how having a rare disease has impacted your life and your families' life. Having a rare disease is a journey that we don't expect, but we manage to handle  unexpected curveballs that come our way. Being part of the rare disease family can also be a blessing. Through support groups and organizations, you have realized you are not alone and can connect with other families and patients who are going through their own battle with your condition. There are some families who had no idea they lived in the same state and were able to meet someone with their condition as well.

                                         See the source image

        Sharing your story makes a difference. I don't share our story for people to feel sorry for us, I share our story to encourage and inspire others. I share my story so people know they are not alone. Sure its been difficult, but it's the story that got me here and the reason I am who I am. Being a rare disease parent opens you up to a whole other world you never imagined being part of. You learn from others and are motivated by others when you hear their stories. Don't be ashamed of your story; it will inspire others.


                           See the source image

              One person can try and make a difference, but together we can move mountains! Raising awareness and advocating is simply rewarding. You can make a difference within your own state. Reach out to you Governor and request a proclamation day for your condition within your state. Participate in Rare Disease day by showing support for you condition or even having your child's school participate by wearing a specific color for that day. Hashtags go a long way through social media. Share facts about your condition using hashtags and share to make aware. Design your own t-shirt to wear around town to have your condition recognized.

       Some conditions like Blount's Disease currently have no supporting organization so it is up to us to bring even more awareness to the table. There are so many ideas you can do to help your condition be recognized. Let's make a difference for the new year to come. Let's help those families who are newly diagnosed realize that they are not alone. No matter the condition we are a Rare Family and raising awareness is the most effective way to help our community. In addition to educating the public, the more recognition your condition receives, the more attention will be placed on research. Let's rise up for those around us who need us to stay strong for them too.

Happy New Year Rare Warriors, 

-Angie,
Blount's Disease Strong

Resources:

http://www.blurb.com/b/7110912-blessed-beyond-blount-s

http://blountsdiseasestrong.blogspot.com/2017/02/tips-to-getting-day-proclaimed-in-your.html





Thursday, October 5, 2017

A Letter to my Blount's Disease Warriors

Dear Warriors, 

               As I sit here and write this open letter to you, I reflect back on 8 and 1/2 years ago when we were first told my daughter has Blount's Disease. We were given no prognosis, not enough answers and were left to depend on our own advocating and internet research. Here we are 2017, 6 operations later, and still battling this condition..........

             But along the way I have come across a circle of people I now consider family; my Blount's Disease family. For all of you are also facing your own challenges, experiences, emotions and a whole new world of having a rare condition. You are not alone. We as a rare community support one another, encourage one another and share our experiences along the way to possibly bring hope to those newly diagnosed. I understand the frustration each and every one of you have with no supporting foundation for this condition. I understand the stress you face from different doctors visits, therapy appointments, surgeries and the financial burden it may put on your family. 

         Never doubt the beautiful impact you have on those around you and all your fellow warriors despite all the challenges that come with Blount's Disease. Never be afraid to advocate, ask questions and educate others on this condition. Battling a rare disease takes strength. Spark inspiration in others and be unstoppable. No one is made to understand the journey you are going through but fight the good fight and stay strong. You my warrior, are an inspiration to the world and your story matters...........

     You my warrior are strong....Blount's Disease Strong. 

Love, 
Angela, Blount's Disease Mama 


Thursday, September 14, 2017

Learn to Trust the Journey, Even If You Don't Understand It.




       Let's Admit. We have all  had days where when something goes bad at work or not as expected we feel overwhelmed and emotionally drained. But what about that moment when you receive and unexpected diagnosis? So many emotions fill in you head, so many thoughts and unanswered questions come into effect, and all you want is information on how the condition will affect you in the future. You want answers to what treatments are available. You spend countless hours behind the computer searching the internet for research only to find there is a lack of information on your diagnosis being that it is rare and there is no supporting organization. You join support groups on social media only to realize we are all in the group for the same mission.....awareness and answers.

      What about breaking the news to your family members? What about those who don't seem to understand and make it as though you did something to cause this? Or those family members who are stuck in the older generations where they believe people today are diagnosed for every little thing. The times you have to fight with insurance companies and Doctor's for approval on certain situations you feel would benefit your condition. Rare is real. Being diagnosed with a rare condition affects not only you, but those closest to us.

      Let's not forget to mention all the time needed to be taken off work/school for specialty visits, testing, and surgeries. The medical bills that pile up from medications and hospital visits that leave you in a financial hardship because this wasn't something you planned for. What about the mental effects from having a diagnosis that lead to anxiety and depression...even thoughts of suicide? Rare is real. Even if we don't understand it, we must learn to trust the journey. Unexpected things happen along the journey and although its not what we hoped for, we don't know how our story will end.....but nowhere in my text will it ever read I gave up.

-Blount's Disease Strong

Monday, September 11, 2017

You Can't Win What You Don't Fight For



          Everyone is fighting their own battle you know nothing about. Every day, someone is diagnosed with some type of condition that can change their lives in an instant. It can mentally impact the family and not everyone will understand the journey. In life we are always going to have those who judge us. Those who will stare, point, whisper, and maybe even laugh. If everyone in the world understood we each have our own battles we are going through, the world would be such a better place filled with kindness, compassion, and respect. But we all know realistically there are people in the world who don't care to understand. Maybe until something were to happen to them or to their family members, then just maybe they would have a change of heart.

        As I sit here and write this blog, I reflect back to when my daughter was first diagnosed with a rare disease. It was overwhelming and stressful to have to learn about her condition and there were times I blamed myself. There were times I would hide in my room and cry because I felt helpless when I wasn't getting the answers I needed or the right resources to get her the right treatment from the right specialist. You cant win what you don't fight for. This isn't about winning battles that make you happy. This is about advocating for yourself, or for your loved one. This is about making your voices heard. Raising awareness and making a difference. At the end of the day, no one understands your child better than you do.

        Fight for what matters most and if you don't feel you are getting the answers you want you get another opinion. Sometimes we have to be our own Doctors when it comes to rare diseases. Not everyone has the answers to every diagnosis. If that were the case, we'd all be cured right?  Whatever journey you are facing let it mold you into being that warrior who will take on any obstacle ahead that you may face. It may take more than one fight, but be that champion who doesn't give up, because you can't win what you don't fight for.


Stay Strong.......Break the silence......Fight for what you want.......


-Blount's Disease Strong

Friday, June 30, 2017

Dear Blount's Disease

Dear Blount's Disease:

When children are diagnosed with a rare condition, no matter what the condition is, it can affect them in so many ways. Not just physically, but mentally. Stress is put on the family as a whole. Financial debt can occur from medical bills, medications, physical therapy, and hospital stays. Different Doctors appointments with different specialist that require requesting time off for work. Living with a rare disease is an ongoing experience for patients and families.

What about the lack of research and no supporting organizations? How many surgeries is it going to take to be the last one? When will the journey be over? If we find the same research the doctors are following off the web and articles, then how can we be sure the treatment they are doing is appropriate just based off what other doctors have done?

What is it going to take for other kids to stop bullying others leading our children to feeling depressed and having to undergo therapy for thoughts of suicide? I am a Rare Disease parent. A parent who has a child with Blount's Disease. Behind closed doors there's more to what people see based of the internet.


(Image credit, D. Laws)
The reality of when we witness our child trying to cover their scars with a pen then trying to scrub away their scars in the bathtub. 

(Image credit, Anneliese)
The pain that comes associated with this condition and no prognosis. The chance of reoccurrence and deformity to their legs along with leg length discrepancy. The chance of developing osteoporosis as they get older or needing knee replacements. 

( Image credit, Anneliese)
The hope that this surgery will be the last one. Wishing you could take your child's place on that operating table. The different tests that are done to rule out other conditions that may or may not be an underlying factor with Blount's. 



So I write to you Blount's Disease, and I share the reality that children face with this condition in hopes that more awareness and research can be brought to this condition. I write to share as a mother who has slept in a hospital chair, cried from fear and joy, who has laid my child in the arms of a surgeon, I am a strong advocate who has found strength when there wasn't any left. Our journey may not be over, but no where in our story will it ever read we gave up. 


Sincerely,
A Rare Disease Parent. 









Wednesday, March 22, 2017

Blount's Disease Awareness Day


March 26, 2017 marks Blount's Disease Awareness Day in the State of Kansas. Governor Brownback proclaimed this day to help raise awareness for those battling this condition. Blount's  Disease is a rare bone disease that affects under 200,000 people in the United States. The cause is unknown and there is no supporting foundation for this condition.

At 18 months old Anneliese was diagnosed with Blount's Disease. She has had multiple operations with more in the future. Anneliese runs a project called Bottlecaps4Blounts and makes custom made bottle caps for those with Blount's or other conditions.

                                             

                                                  Rare Disease Day at the State Capitol



We recently attended the Kansas State Capitol for Rare Disease Day and had the opportunity to meet Congressman Yoder and Lt. Governor Colyer and shared a little about Blount's Disease. It was a great experience to help raise awareness for others and represent the condition.

                                                 
                                                       How Can You Help Support?

This Sunday March 26th, lets help recognize Blount's Disease by wearing the color Blue. Take a selfie, or group picture and post your image to any social media site using the hashtag #blountsdisease. Together we can help make a difference and raise awareness. The event will be hosted all day, worldwide. For more information you can check out the event on Facebook.


"A disease may be rare, but the awareness shouldn't be."



Sunday, February 26, 2017

Tips to Getting a Day Proclaimed in your State for Blount's Disease

Getting a day Proclaimed in your State for Blount's Disease
Recently the Governor of Kansas, Sam Brownback, approved a Proclamation for Blount's Disease Awareness Day. It is an honor for this day to be recognized throughout the state and  awareness can be made for this condition. Some have recently asked me what I did so they can get an awareness day for Blount's within their state. After writing letters, submitting petition signatures, emails and hearing no answers back, I reached out to our State Ambassador from the National Organization for Rare Disorders, Eden, and she led me in the right direction on how to apply and submit my application.

A proclamation commends individuals or announces upcoming events or celebrations through a formal public announcement or declaration made by government officials. Blount's disease is the perfect opportunity to ask for a proclamation to honor and recognize those who had or have Blount's Disease.

Depending on which state you reside in some will let you apply online and some will have you mail or fax your request.  Your first step would be to contact the government official’s office of your state to request the proclamation. Keep in mind some states want you to submit your request up to 4 weeks in advance of the date you are requesting.
Governor Sam Brownback, Kansas

Be sure to check the official’s website for instructions on how to submit a formal request. There may be an online form or instructions on what information must be included in a letter. And plan in advance to allow enough time for them to process it. You have to option to have your proclamation mailed to you once approved or you can  meet with the official for the proclamation signing.
You can likely be in the room when the proclamation is signed, and the official may let you take a photograph or group photo of the signing.

Here is a sample of what I requested on my application:

WHEREAS, there are nearly 7,000 diseases and conditions considered rare(each affecting fewer than 200, 000 Americans) in the United States, according to the National Institutes of Health (NIH); and

 WHEREAS, Blount's Disease is considered a rare disease affecting less than 1% of the population in the U.S. with no supporting organization and not enough research; and

 WHEREAS, Blount's Disease is a developmental disorder characterized by abnormality in the growth plate in the upper part of the tibia that causes pain and can lead to deformity and arthritis issues in the future; and

  WHEREAS, Individuals affected by Blount's Disease often experience problems such as difficulty finding a medical expert, and lack of access to research and treatment; and

 WHEREAS, the cause of Blount's Disease is unknown and patients and caregivers who have this rare disease will now participated in that observance.
Build a relationship and promote your Proclamation:
Once your request has been approved and you have received your award, remember to always acknowledge the officials contribution. This can be done for example by sending a thank you note with a picture of you and the proclamation, or a t-shirt representing the condition. Reach out and contact local newspapers throughout your state about the proclamation along with a photo. If your article happens to be published, you can send a copy to the official who approved your request as a thank you.
If you have any further questions on this process feel free to email me at blountsdiseasestrong@gmail.com or contact me on fb @blountsdiseasestrong



Friday, February 24, 2017

Getting a day Proclaimed in your State for Blount's Disease

Recently the Governor of Kansas, Sam Brownback, approved a Proclamation for Blount's Disease Awareness Day. It is an honor for this day to be recognized throughout the state and  awareness can be made for this condition. Some have recently asked me what I did so they can get an awareness day for Blount's within their state. After writing letters, submitting petition signatures, emails and hearing no answers back, I reached out to our State Ambassador from the National Organization for Rare Disorders, Eden, and she led me in the right direction on how to apply and submit my application.

A proclamation commends individuals or announces upcoming events or celebrations through a formal public announcement or declaration made by government officials. Blount's disease is the perfect opportunity to ask for a proclamation to honor and recognize those who had or have Blount's Disease.

Depending on which state you reside in some will let you apply online and some will have you mail or fax your request.  Your first step would be to contact the government official’s office of your state to request the proclamation. Keep in mind some states want you to submit your request up to 4 weeks in advance of the date you are requesting.
Governor Sam Brownback, Kansas

Be sure to check the official’s website for instructions on how to submit a formal request. There may be an online form or instructions on what information must be included in a letter. And plan in advance to allow enough time for them to process it. You have to option to have your proclamation mailed to you once approved or you can  meet with the official for the proclamation signing.
You can likely be in the room when the proclamation is signed, and the official may let you take a photograph or group photo of the signing.

Here is a sample of what I requested on my application:

WHEREAS, there are nearly 7,000 diseases and conditions considered rare(each affecting fewer than 200, 000 Americans) in the United States, according to the National Institutes of Health (NIH); and

 WHEREAS, Blount's Disease is considered a rare disease affecting less than 1% of the population in the U.S. with no supporting organization and not enough research; and

 WHEREAS, Blount's Disease is a developmental disorder characterized by abnormality in the growth plate in the upper part of the tibia that causes pain and can lead to deformity and arthritis issues in the future; and

  WHEREAS, Individuals affected by Blount's Disease often experience problems such as difficulty finding a medical expert, and lack of access to research and treatment; and

 WHEREAS, the cause of Blount's Disease is unknown and patients and caregivers who have this rare disease will now participated in that observance.
Build a relationship and promote your Proclamation:
Once your request has been approved and you have received your award, remember to always acknowledge the officials contribution. This can be done for example by sending a thank you note with a picture of you and the proclamation, or a t-shirt representing the condition. Reach out and contact local newspapers throughout your state about the proclamation along with a photo. If your article happens to be published, you can send a copy to the official who approved your request as a thank you.
If you have any further questions on this process feel free to email me at blountsdiseasestrong@gmail.com or contact me on fb @blountsdiseasestrong




Wednesday, January 25, 2017

A Disease May be Rare, but the Awareness Shouldn't Be



There are over 7000 rare diseases in the world with more being discovered everyday. The need for more research, the lack of awareness, the financial challenges, and insurance problems are all factors for individuals and families who suffer from having a rare disease. 

I have come to realize that nothing will be proactive if we don't make a change. We need to become our own advocates and doctors on our condition. We need to help educate the community, friends, and our family members as much as we can.  
Being that Blounts Disease is a rare disease with no supporting foundation, it is up to us parents to step up and fight for our children so that our voices are heard and the feelings of isolation fade away. 


A lot of people don't realize the effects Blount's Disease may have on a child. There is no prognosis on the possibility of Blounts coming back after surgery. Sadly, This condition is basically a " see how it goes trial." There isn't enough research to support proper treatment and each case is handled differently according to each doctors plan. So much medical trauma can cause a child to undergo anxiety and depression, and bullying in school for the way they walk has also been a factor from having this condition. Some are able to be treated with bracing while some have to undergo several operations within their childhood. Who's to say how this condition will impact their adult life because their isn't enough research to support it. 


Having a rare disease makes the individual and the family much stronger as a person and makes them appreciate more in life. People may say "I don't know how you do it," but did we really have choice? No, we just know we will never give up. A disease may be rare, but the awareness shouldn't be. 





Friday, January 6, 2017

Montrae Holland: Living Life to the Fullest Despite Your Condition


Blount’s Disease opened all my doors to actually living. It gave me a different perspective in life. I felt if I can overcome this disease then nothing can stand in my way. I became goal driven.”



The above quote above was spoken in a recent interview by former Dallas Cowboy’s player Montrae Holland. Holland loved playing football since he was a kid and at the age of seven he started experiencing pain in his right leg that years later led to his parents having to take him to the hospital. There at Scottish Rite Hospital in Dallas, Texas is where Dr. Richardson diagnosed him with Blount’s Disease at the age of 12 on his right leg. 

Blount’s Disease is a rare bone disease that affects either one or both legs that causes the lower leg to angle inward. Holland didn’t have treatment with bracing; he had surgery where they performed a successful osteotomy on his right leg. There was a time during the recovery process where he didn’t like going to school and would question “why me?”  As an adult now, he still has a plate and nine screws in his leg, but that didn’t stop him from accomplishing his goals. He made himself a promise that once he was healed he would live life to the fullest. As he healed and got better football was introduced back into his life and was able to play offensive guard. No injury had a chance because he defeated Blount’s. Even though down the road he didn’t get to play football again due to his bicep, in his mind, his torn bicep was nothing compared to what he had been through with having Blount’s.


To this day, Holland still visits the hospital taking gifts to children and remains in contact with Admin of the Ben Has Blount's Network, Kira Hudson. Her son was diagnosed with Blount's Disease and she created her group six years ago in hopes to reach other families going through the same journey. Kira has advocated for many families and has had braces and other services donated to them. She continues to help raise awareness and has been a great support and inspiration to the Blount's Disease community.
The changes Holland wishes to see is actually within the patients to adopt a why not me attitude that will help them defeat Blount’s Disease and any other thing that shows its ugly face on their journey. “It’s a long road, but we have to keep the children looking forward and energetic. Giving them hope and something to look forward to. Focus on the vision. Keep their mind focused on this disease not being their end game. There IS life after Blount’s Disease.”
-Angela Urbano


For those affected by Blount's Disease feel free to join:

Tuesday, January 3, 2017

Living With a Rare Disease: Why Blount's Disease Matters


Image result for rare disease




      Blount's Disease affects under 200, 000 people alone in the United States. With no supporting organization, awareness and sharing our stories is the most powerful tool we have. Many of us on these groups have children who were diagnosed with Blount's Disease. But what about the long term? What will happen to our children when they get older? Will they need knee replacements, end up with osteoarthritis? Will they suffer with leg length discrepancy? The outcome of Blount's is unpredictable. Some may be cured from it, while the condition reoccurs for others after surgeries.

      I had the opportunity to hear from the adult side of those affected by Blount's Disease. One of the most serious problems for those affected with a rare disease is that there is too little or not enough research being done. Finding that connection with others who are going through the same experience can provide reassurance and a sense of community.

"I'm 48 years old and have had Blount's all my life ! Mine has gotten worse now that I'm older and have gained weight, there are not a lot they can do for Blount's. Most doctors are telling me that they know very little about it! I really would like to find people who have it so' we can get together and maybe try to find funding for the studies of Blount's for our children in the future to be able to be treated as they need to be. Blount's has cause me a lot of heartaches in my life and a lot of loss's, I also have drop foot where because, of having Blount's they killed a nerve during surgery in which gave me drop foot! I have a surgery coming up this month and I pray my leg gets better because now its knocking out my hip joint! Because of the shortness of one leg and the pain is so real!" - Jewell

"My name is Dustin. I had blounts as a kid. Im now 29. My blounts affected my tibia growth plates in both legs. My condition was the most extreme my doctor Kieth Gabriel at Cardinal Glennon children's hospital had ever seen. I had just turned 7 when I had my first surgery. 5 years and ten more surgeries later, my doc released me. My left leg ended up shorter than my right so I developed severe scoliosis over the years along with severe arthritis in my lower back. Anatomically your height and arm span should be the Same or close to the same. My arm span is 6'5". My height is 5'6". This means I lost about 11 inches off my height."

"I'm 59 years old and had Blount's disease as a child. I didn't get treatment until I was 13 and by then I had to have surgery (both legs). My younger brother also had it but only in the left leg which also required surgery. My male cousin had it in both legs but the left was the worse. He never had treatment. I had to have 2 surgeries. One at 13 and another at 14 because I didn't have enough growth left for the first surgery to be effective. The articles I've read about Blount's says "there's no pain associated" - WRONG. I had pain all the time as a child but they called it "growing pains." My knees would also go out on me and I would fall. At last at age 55 I had double knee replacements and for the first time in my life, my knees don't hurt.- Tessa

If we continue to raise awareness and share our stories, we never know who we will reach out there in the world, that could hopefully lead to better research and more answers. Lets continue to be a support of encouragement and work together to have hope and raise awareness for Blount's Disease.