Tuesday, August 11, 2020

My Blount's Disease Journey: From Diagnosis to Advocacy


                                                                                                      Photo credit: Anneliese


My personal journey began with different medical problems at 18 months old. After I had my first surgery at 4 years old, I started my first of many sessions with physical therapy. Ten surgeries later, at 13 years old, I am still battling Blount's Disease which has not only made me stronger, but has inspired me to share my journey with others and be an advocate for the mental health and rare disease community. Having a rare condition isn't easy. It can create a mix of emotions and can not only change your life, but change the lives of those who are closest to you. The journey with having a rare condition has helped shape my goals, my life, and my future. With the help of my mom, I have taken my experiences and together we established the first nonprofit in the United States for Blount's Disease called the Blounts Disease Strong Foundation.

Blount's disease can be isolating and I have learned mental health awareness is very important. Living with a rare condition can have a huge impact on one's mental health. I have faced my own challenges and for us patients, there is a double stigma with living with a rare disease and facing a mental health illness. I am not ashamed of sharing my story. All the people who have knocked me down in the past through bullying have inspired me to be a better advocate. Sharing my story can help bring the the community together and help someone find their own chapter in life. 

My journey and goals are far from over. I want to inspire people out there in the world. I want others to not be afraid when they hear I have a rare disease. I want people to understand the importance of raising awareness about rare diseases and how it can help with research and connecting other families. I want to be the voice, advocate, and cheerleader for others. I want other Blount's Disease warriors to find their passion and know that just because we have a rare condition, it doesn't make us any less.

-Anneliese
 #blountsdiseasestrong 

Friday, July 3, 2020

Hello... I am Strong


Challenges make us stronger. There is no challenge we can't face. Being in the rare community allows those challenges to push us harder to advocate, they push us to be brave, and most of all generate hope in us. Having a rare condition may affect you mentally, emotionally, and physically...but you my friend are strong. Your story inspires hope in others, and can give others hope to accept their own story. Don't be afraid to share it with the world. 

Even though it may not feel like it sometimes, even though you may feel frustrated with your condition, and you don't have the exact answers you need, you are strong enough to face your struggles. You have been through a lot and it is not an easy journey, but I am so proud of you. If you fall three times, stand up  four. Never forget everything you have been through and how far you have come. The hardest prison to escape from is the mind. It's ok not to be ok. Your illness does not define you. Don't waste time feeling sorry for yourself. Be thankful for your struggle because without it, you wouldn't have stumbled across your strength. The world is in our hands to advocate and make a difference. 


You were born to make an impact..so rise up, stand in front of the mirror, and repeat after me... "Hello.... I am Strong!"

-Angela, President of Blounts Disease Strong Foundation 

Sunday, March 29, 2020

Behind Blounts: COVID-19 Anxiety

Grocery shelves are empty, states going on shut downs, schools are closed, and that appointment or surgery that was scheduled for your rare disease kiddo was canceled. Who would ever imagine 2020 would lead to a global pandemic? This situation can affect our mental health and create heightened anxiety for many. Although we are all feeling anxious right now, I believe this pandemic will change the world for the better as challenging situations encourage others to evolve and grow into better people.

 During this crisis talk to people you trust . Think about reaching out to friends, family, or your community. The outbreak of the coronavirus may be stressful for some who already live with anxiety. We all watch the news wondering what will happen next. Try and make it a priority to stay in touch with friends and family. Don't be afraid to talk about the corona virus with your children. Social media is a powerful tool reminding us that we are not alone.

Anxiety can rise for those with Blount's disease. It can be frustrating not being able to follow up with your specialist during this time. We as a rare disease community need to come together to help be a positive influence during this anxious time. Helping others will make you feel better and support your own mental health.

I just want to remind you it is ok to feel whatever you are feeling. Some days will be harder than others, but make time to unwind and connect with others as we all face this pandemic together. Most of all stay strong....blount's disease strong.

Angela,
Admin of Blount's Disease Strong

Monday, February 10, 2020

Helping Siblings Cope with Blount's Disease Diagnosis

sibling hug
There can be a mix of emotions when it comes to a brother or sister being diagnosed with a rare condition. Coping with change can be a scary experience for siblings and worrying that their brother or sister has to have surgery and stay in the hospital. Some emotions they can experience include anger, fear, guilt, or jealousy. The diagnosis of a child can impact the entire family and when everyone can come together during the journey, it makes it easier to help with one another's emotional needs. 
When a child is diagnosed with a rare disease, sometimes the parents focus may be on the diagnosed child and they may sometimes forget the other siblings in the home. That is why communication is important so siblings feel their concerns are being heard and questions they have are being answered. We can't fix every feeling that may have, but we as parents can make it easier to meet the needs of siblings. 
During diagnosis, treatment and recovery, we should understand what behaviors to expect from siblings. Siblings should be encouraged to talk about their feelings even if it is not positive. Most of all, make time for undiagnosed siblings so they know they are still important. A rare disease can bring many changes and challenges. Doctors appointments, schedules, and surgeries can be exhausting for the entire family system, so never hesitate to ask for hep when needed. 

-Angie, Founder of Blount's Disease Strong

Sunday, December 29, 2019

A Message to My Daughter


My daughter wasn't born strong, she was made strong. Every strong girl has their breaking point. Someday things will make sense. I want my daughter to believe deep in her heart she is capable of achieving anything she puts her mind to. 



To My Daughter:                                                                                                                               

                       Stay strong and be brave princess. You may have scars on your legs from the countless surgeries you have had, but you wear those scars like a warrior. I don't want you to be ashamed of your scars. Each of those tell a story of the journey and emotions you have been through. The journey you have been through has shaped you into the beautiful person you are today. You may have Blount's Disease, but Blount's Disease does not have you. I want you to inspire and influence others to do the same. I want you to share you story and help educate others who face the same challenges as you. You have a voice and a story that can give hope to others fighting Blount's disease. I know sometimes that the pain takes over you and I want you to know that there is hope. Don't allow anybody or yourself tell you otherwise that you are not enough, because you are loved.  As a mom, I am not perfect. I make mistakes. In the end, no one could ever love you the way I do. I will fight for you, I will advocate for you. I will do whatever I have to do to make sure we make it through this journey together. This world is hard and it can be filled with dark and scary things. No matter how dark it gets, the sun will rise again. I am so blessed to get to love you and be your mom.You'd be surprised who's watching your journey and being inspired by it.....don't quit. 

Be brave, have courage, and love life. 
Love you to the moon and back, 
Mom. 
#blountsdiseasestrong 

Saturday, November 30, 2019

May your Holidays be filled with Hope



Families that are affected by a rare disease face many challenges and hope for better research, more answers, and cures for the conditions they face. The holidays can be a tough time for families in the rare community. There are many families who deal with stress on an everyday basis and it can be hard to partake in the holiday cheer during the season. Some families face medical expenses through the year that make it financially hard to be able to afford gifts for their children. Some families are spending the holiday's in the hospital with their child. Some children are unable to participate in  holiday activities because they are recovering form surgery. When most families are gathering to share holiday meals and exchange presents, there are other families who are facing the unthinkable. 

 In effort to bring hope and light to the families affected by Blounts disease, I am here to remind you that you are not alone. Holidays should be a magical time for families and although we may be facing struggles and challenges, our community is stronger than ever. Take time to enjoy something about the season and most of all take time for yourself. Self care can seem like it takes too much time, but we must try to stay mentally healthy especially during the holidays when it can take up our emotional energy. Enjoy the holidays for what they are; a time to enjoy with your family. Whenever we begin to feel as if we can no longer go on, hope whispers in our ear to remind us that we are strong.. Blount's disease strong.

May your holidays be filled with hope. 

Angela U.,
 Admin, Blount's Disease Strong

Tuesday, January 15, 2019

Connecting with other Parents

         

               Everyone has a story. With that story comes a story worth telling. A story that can help a person during the most difficult moments in their lives. A story that can bring awareness and make others feel like they are not alone. Stories can help make a difference in the world. Parents of children with a rare condition often feel alone, judged, and frustrated until they meet other parents sharing a similar journey. The beginning of a new diagnosis can be a scary time for the family and your diagnosed child. You feel like enough questions aren't answered and you wish you can do anything to take the pain away. Connecting with other parents and families who are experiencing the same diagnosis can help make the journey a little less scary. Being able to talk to others with whom you can relate can help with the emotional challenges a rare disease can bring. Being part of a support group or online community can help connect you with other families who may live close or near the same area as you. A support group can help you learn about information you weren't aware of, feel more in control of the situation, and be inspired to wanting to raise more awareness.

             The internet is such a useful tool to connect with other families and receive encouragement. Sharing your personal experiences takes courage and also helps you become and advocate for your child. Blount's Disease is an ongoing experience for patients and families. A social connection can help improve our psychological well being. Having a place to come together can create a foundation for effective interactions. Blount disease is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Blount disease, or a subtype of Blount disease, affects less than 200,000 people in the US population. 

             You don't have to face this journey alone. You never know who you will connect with. Feeling less lonely, less isolated, and not being judged is a huge benefit of support groups. The best part is you can read about other experiences from the comfort of your own home in your pajamas! Happy connecting! 

-Angela U., Admin of Blount's Disease Strong 


If you or someone you know was recently diagnosed with Blount's Disease feel free to join our closed support group on Facebook at https://www.facebook.com/groups/1633747536929800/