February 4, 2021 at 4:00 pm #16626Leah LeilaniKeymaster
“But this isn’t a tragedy; quite the opposite. This is a story of acceptance and resilience. It is an uplifting tale, involving a series of quests to figure out who the main protagonist really is. There are chapters of light and chapters of dark, shrouded in a mist that obscures the path ahead.”
Andy Rusch’s first article as an MD News Columnist offers a glimpse into his life with Becker’s MD and what he hopes to share and convey in his column, Of Dragons and Dystrophin.
Have you read Andy’s first piece? Do you or someone you know have Becker’s MD? Are you excited to read Andy’s future articles about his journey with BMD?
June 16, 2021 at 5:07 pm #17172RenParticipant
I stumbled by chance on Andy Rusch. It is extremely rare to find a Becker MD voice on the net. Much rarer than Duchenne MD, although the proportion could reach a third of the Duchenne population. A paradoxical problem with Becker, is that it can’t be seen to observers until adulthood and this is partially what this story is about.
I think this issue eats up Becker MD people, because they have constantly to justify about their status which is not understood. An issue which exists also within the patient organizations where they aren’t as stricken as Duchenne patients. I recall a person who asked why I was requesting research about this illness. Because here comes the saddest fact: Becker are overlooked in this area too, although it seems an easier illness to fix than Duchenne, as it occurs at a later age.
Thanks for these articles!
June 21, 2021 at 7:36 pm #17183Andy RuschParticipant
First off, thank you so much for reading and responding to the column. It’s always fantastic to get discussions going.
I can relate to what you are mentioning with feeling slightly forgotten. I am actually working on a new column regarding that topic. I’m not sure the issue is so much Becker is overlooked as much as trying to find a cure for the highest degree of severity and working it’s way down since the two are so similar. On the other hand, it is very difficult to see treatments for not only Duchenne but other disease as well and not feel slightly left out.
What is important is the level of studies being conducted for all disease that lead to greater understanding of the disease process and hopefully a treatment for those of us with Becker but other progressive issues also. Keep your head up and with enough traction from the column and these discussions, our hope can be to bring greater awareness to the Becker and Duchenne community. Thanks for writing in!
June 18, 2021 at 4:15 pm #17176
My son is 46 with Becker’s and it’s been a difficult journey. He’s been in power chair for 18 years now. He needs full care and must be fed now.
although this disease is difficult he embraces all the little things in life more than most of us!! He is awesome, smart, and great sense of humor. Andy it would be great if you two could hook up!!
June 20, 2021 at 11:58 am #17177RenParticipant
I am so sorry to read this. Unfortunately, I am a father of a Becker child, I am not afflicted myself. I wish I could help you in a way or another. What kind of mutation has he? There is more variability than with Duchenne.
My boy has a great sense of humour too, but he is ADHD also. He is not adolescent yet and is ambulatory. I hope your son is OK regarding the heart, as this is a risk with BMD. Recent papers have found that ACE drugs are even better when taken before the heart shows issues.
Did you check your heart too? Often mothers of BMD children are at risk also, as they harbor the mutation even though they have a second gene which is fine. Here is the only site of a BMD person I am aware of: my-beckers-story.blogspot.com.
This person is living in Ontario, and has a FB page which could act as a sort of clearing house. I hope this helps you to find a closer relationship for your son! Have a great week-end.
June 22, 2021 at 3:33 pm #17188
thanks for writing!! My son is now 46. At 27 he had an heart attack. Very scary but his doc saved him!! He was in a facility at the time and had delayed care! By the time I got there he was very ill and I called ambulance right away. Doc in ER was right on it. Now with meds and ICD in his chest things are going well. He’s had it there for 10 years at least. Only went off slightly twice. He’s monitoring 24 seven by docs office and it gives him some piece of mind.
Your sound like a great Dad!! My son has lived with me for 14 years and we are blessed to be together.
Best of luck to you and your family!!
June 21, 2021 at 7:42 pm #17184Andy RuschParticipant
Wonderful to hear from you! I am thankful I remain independent at my age but things are starting to become more difficult for me as well.
I would absolutely love to connect sometime with your son. My hope with writing the column is for people to feel represented in a way that is seemingly lacking based on other responses in this forum. I certainly don’t speak for all voices, though, so I am psyched you commented and are joining the discussion with your story. It’s important to me to not only share my stories but yours as well. I encourage you to reach out to me anytime and I will definitely respond. I do have a presence on social media so if your son is comfortable, feel free!
June 22, 2021 at 7:53 am #17185
Nice to hear from you. My son has interests in many things. He’s a bit shy and reserved. I think if you wrote to him he would be thrilled. He’s feeling down lately and his Covid immunization has left him with terrible vertigo and he can’t even watch tv now too well.
If u feel comfortable and you have time message me and I’ll put you in touch with him. Stay safe and I’m thinking of you!! Good luck with your new projects!! His name is Dan.
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