Sunday, December 27, 2020

The Last Sunday of 2020

I woke up this morning and made my cup of coffee. As I sat at my desk and took that first sip it hit me.... that today is the last Sunday of 2020. Boy, how this year has flown. We have all faced many challenges this year and challenges are what make life interesting. Being able to overcome some of the challenges we faced is what makes life meaningful. It is likely 2020 is a year we will never forget. This will be a year that is written down in our history books. 

 This year has caused a a mental health crisis for individuals leading to more depression and anxiety. Many have been left without jobs and no health insurance. Those in the rare disease community have had to adapt to a different way of treatment and surgeries being postponed due to the pandemic.  I know you are tired. I know you feel broken. We are all human, it is perfectly ok to feel sad or angry. 
Although there have been times of chaos, lets reflect back on our own moments of joy and gratitude. 

Every day is a new beginning. Take a deep breath, smile, and start again. 

A new year is on the way and the possibilities are endless. I hope this new year ahead brings you peace as you open that new chapter book of blank pages. The pen is in your hands. End this year strong, the world needs you at your best.  

Not to spoil the ending for you...but everything is going to be ok. 

Angie, Founder of Blounts Disease Strong Foundation


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.


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 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.

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