To our valued and loyal members of the Muscular Dystrophy Forums, Dani and I are saddened to inform you that we will no longer be moderating the forums as of today, February 28. 
Fortunately though, the forums will still be operational. We encourage you to continue to participate in topics by joining discussions and sharing… Read more

February is Rare Disease Awareness Month. All month long, people around the world raise their voices to educate and raise awareness with their stories regarding the lives they lead with rare diseases. 
 
In recognition, members of the rare disease community are sharing why rare disease awareness matters to them with the help of BioNews.… Read more

Hey everyone! Let’s discuss inclusive fashion and beauty. I came across an organization I wanted to highlight.
Guide Beauty is a company with a uniquely designed line of universally inclusive makeup applicators. As they say, “an idea born of love and challenge,” their tools can be used for the beginner learning new techniques, the… Read more

With a new year also comes a fresh start. More than any other time of year, people feel the need to change. Change their mindsets and change their habits.
People act like life will change just because it’s the start of a new year but in reality, we have to make change happen. In order to do that we have to put systems in place. We can make… Read more

My mom always carries her pepper spray with her wherever she goes and I have a whistle attached to my purse. Although these are not allowed everywhere in places such as Disneyland, they are very user friendly for people with disabilities. I’ve also seen cool weapons for women on Amazon.com like small knives concealed in lipstick containers. It… Read more

Hey Mary,

how are you doing? How has the new year been treating you?

Hi Larry,

I just wanted to check in and see how you’re doing?

I can do that as well. I’m so my best to show my parents the gratitude they deserve but I’m especially grateful if one or both of my parents are sick, overwhelmed or particularly exhausted because I realize that they still have to take care of me during those times. Do you find caregiving a touchy subject when you’re in the middle of an… Read more

Barry, have you brought this up with a doctor or thought about seeking out a physical therapist to see if they could help?

Barry, have you brought this up with a doctor or thought about seeking out a physical therapist to see if they could help?

Although society has come a long way in defying gender roles, I feel as though there is still a narrative that marriage and having kids = happiness. Particularly for women recently.

This can be harmful to people who are unable to achieve these so-called “life goals.”

Columnist, Sherry Toh from SMA News eloquently put into words exactly… Read more

Do you or someone you know want to share your Muscular Dystrophy story? Are you interested in educating people about life with a disability and helping others who are living with the same condition?

Bionews is on the lookout for another Muscular Dystrophy News columnist to add another voice to the rare disease community. Here at Bionews we… Read more

I have been reflecting a lot on this past year, as I normally do in December. I realize that this year has brought with it many ups and downs.
I’ve gone on new adventures like a trip to Universal Studios Hollywood for my 25 birthday. I’ve learned news things like how to change my habits thanks to the book Atomic Habits and, oh yeah, I’ve… Read more

Since turning 18, several of my pediatric specialists at the Children’s Hospital have continued to treat me as their patient through adulthood. Knowing how hard it would be to introduce a new doctor to my medical history and find one that has knowledge about my condition, I’m very thankful my pediatric doctors kept me as a patient. 
 
As of… Read more

I realized this late too but caregivers deserve our appreciation more than just in November. Caregivers help us live our lives to the fullest and provide us with quality of life. Thank you to all the hired caregivers, family members that care-give, nurses, assistants and all other forms of caregivers. We love and appreciate you.

Tracy, I think you’re doing the right thing with having several air purifiers. Dani’s suggestions may help too especially with all that pet dander. Have you thought about seeing an Allergist for better solutions and maybe some medication recommendations?

Cold temperatures can be dangerous for those of us who use wheelchairs. Because we are sitting still for prolonged periods of time, our bodies don’t generate the normal body heat from movement and exertion. This is why it’s so important to dress warmly in the winter.
Sometimes, a beanie and scarf just don’t cut it when the temperatures… Read more

Now that the temperature has dropped so has the humidity. Although I’m happy to not be boiling in the heat anymore, my health is struggling to adjust to the dry, crisp air.
Instead of referring to this time of year as Autumn or Winter, in my household, it is called allergy and flu season. The nose bleeds and worsening of my post-nasal drip are… Read more

Although I don’t travel very far or very often, I do carry snacks with me in case I need a boost or get hungry. I have to a low fat diet for my liver and it has been a struggle to find protein bars and on-the-go snacks that fit my dietary needs. I like to carry nuts, Cliff bars, mini Kind bars, Gatorade and electrolyte drink mixes with me when… Read more

For many years now, my family and I have gone over to a friends house for Thanksgiving. They are very understanding about my disability and allow me to use my portable ramps to get into their home. I don’t go and see family because the majority of them are not understanding or accommodating. I definitely consider my friends to be my family.

I know exactly how you feel Dani! I feel that way just after hanging out with my friends, so there’s no way I’m able to work 9-5. You’re right, employers and companies expect so much from their workers making it so stressful. And there can be a lot of guilt attached when we’re constantly in a state of recuperation. Our bodies are our… Read more

I’m so sorry for your loss, Dani. I find that grief tends to make me tired, sort of the same as depression. My body feels like it has to work harder than usual to function and get through the day. It really does feel like a type of fatigue. It’s strange how mental health can effect us physically too but it does.

My family and I have found that having an Insurance broker has been monumentally beneficial in helping us find the best insurance provider for my specific medical needs. Rather than insurance agents that represent a company, brokers are different because they represent the customer by providing expert guidance, access to policy information, and… Read more

Every time my partner advocates for me, it always warms my heart. Not only does it take some of the weight off my shoulders to always have to speak up for myself but it affirms that he is aware of my needs. 

Even as he searches for his first apartment, he keeps me and wheelchair accessibility in mind in the hopes that I am able to visit… Read more

Tina, I hear you! Pain makes doing anything 10x harder. I think one of the hardest part about SSI and work is that there is no in between. You can’t work only when you feel well and you can’t make a living working only a few hours a week which is that SSI allows.

I do hope the medication helps. I have fibromyalgia so I experience some pain… Read more

October is National Disability Employment Awareness Month. This month, we recognize disabled Americans in the workforce as well as those unable to work. 
 
SSI stands for Supplemental Security Income. Social Security administers this program. They pay monthly benefits to people with limited income and resources who are disabled, blind, or… Read more

Jason, it sounds like your son has some creativity! I love that he took the initiative to customize his chair. Wheelchairs can look quite plain on their own and adding some fun to them shows off our personality and character, which I think many think we as disabled people don’t have.

Thanks for your concern. It means a lot. Fortunately, both my mom and dog came out fine and we now have our car back.

When the conversation about privilege opened up a few years ago I started to look at my life from a different perspective. Privilege doesn’t just involve wealth but it can also pertain to race, support systems, and disability.
I heard one woman on TikTok today bring up the topic of privilege and diagnosis. It is a privilege to have a proper… Read more

Just last week, my mom was violently t-boned while driving my dog to the vet. Thankfully, our van has a rear entry ramp and wasn’t affected by the crash but we are still without our wheelchair-accessible car as it gets repaired.
Our car dealership did have one available wheelchair-accessible vehicle but it is nowhere near as convenient as our… Read more

I think it’s just another one of their ableist ways. They don’t tend to make anything easy on any of their clients. It’s as if they try to get people to just give up and not fight for their needs.

Disability makes it challenging to reach for things and lift heavy objects on our own. This can make organizing our spaces tricky and it may take a lot of problem-solving to make our homes the most efficient for our needs. 
A few things I try to keep in mind when organizing my bedroom in my parents’ house is to keep heavy items closer to the… Read more

Sounds like NuMotion! Hence, why they’re called No-motion. I hope you can get it all sorted out painlessly and finally get some closer. As well as prevent someone else from suffering the same fate or worse.

Pete, my mom and I take take Miralax for the exact same reason (her GI track is worse than mine). I 100% agree that medications help us live better and longer with less pain and discomfort. It’s like saying our feet aren’t meant for shoes. We do what we have to live comfortably within reason. Some more than others.