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Leah Leilani started the topic Saying Farewell to the Forum in the forum Adults With Muscular Dystrophy 6 months, 3 weeks ago
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 your…[Read more] -
Leah Leilani started the topic Why Does Rare Disease Awareness Matter to You in the forum Adults With Muscular Dystrophy 7 months, 1 week ago
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. Each…[Read more] -
Leah Leilani started the topic Creating a Culture of Broader Inclusion in Fashion and Beauty in the forum Adults With Muscular Dystrophy 7 months, 2 weeks ago
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 profe…[Read more] -
Leah Leilani started the topic Taking Small Steps to Change Habits in 2023 in the forum Adults With Muscular Dystrophy 7 months, 3 weeks ago
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 g…[Read more] -
Leah Leilani changed their profile picture 7 months, 4 weeks ago
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Leah Leilani replied to the topic Self Defense for People with Disabilities in the forum Adults With Muscular Dystrophy 7 months, 4 weeks ago
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 w…[Read more]
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Leah Leilani replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults With Muscular Dystrophy 7 months, 4 weeks ago
Hey Mary,
how are you doing? How has the new year been treating you?
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Leah Leilani replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults With Muscular Dystrophy 7 months, 4 weeks ago
Hi Larry,
I just wanted to check in and see how you’re doing?
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Leah Leilani posted a new activity comment 7 months, 4 weeks ago
Hi there Manuela and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani replied to the topic Caregiver Appreciation in the forum Member Spotlight 7 months, 4 weeks ago
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 argum…[Read more]
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Leah Leilani posted a new activity comment 7 months, 4 weeks ago
Hi there Eduard and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani posted a new activity comment 7 months, 4 weeks ago
Hi there Amit and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and judgment…[Read more]
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Leah Leilani replied to the topic Shaking due to muscle weakness in the forum Adults With Muscular Dystrophy 7 months, 4 weeks ago
Barry, have you brought this up with a doctor or thought about seeking out a physical therapist to see if they could help?
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Leah Leilani replied to the topic Shaking due to muscle weakness in the forum Adults With Muscular Dystrophy 7 months, 4 weeks ago
Barry, have you brought this up with a doctor or thought about seeking out a physical therapist to see if they could help?
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Leah Leilani started the topic Traditional Family Values and Disability in the forum Adults With Muscular Dystrophy 8 months, 1 week ago
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 how…[Read more]
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Leah Leilani started the topic Want to Share Your MD Story? Become an MD News Columnist Today in the forum Adults With Muscular Dystrophy 8 months, 2 weeks ago
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 are…[Read more]
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Leah Leilani posted a new activity comment 8 months, 2 weeks ago
Hi there Kiara and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani posted a new activity comment 8 months, 2 weeks ago
Hi there Durgesh and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani started the topic Have You Been Reflecting on This Past Year? in the forum Adults With Muscular Dystrophy 8 months, 4 weeks ago
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…[Read more] -
Leah Leilani started the topic Having Pediatric Doctors as an Adult in the forum Adults With Muscular Dystrophy 9 months ago
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 this…[Read more] - Load More