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How Are Muscular Dystrophy And Spina Bifida Different?


This is a photo of my friend Karly who are both white women and we are smiling for camera .

When people see two wheelchair users hanging out it is often assumed that our disability and challenges are the same but this is so far from the truth and many chronic conditions are very different from each other. Some wheelchair users have the ability to walk while others don’t and only need them for long distances. Spina Bifida and Muscular Dystrophy both use wheelchairs but these disabilities don’t even come in the same ballpark because we use them for different reasons. If you have Spina Bifida you won’t always need to use a wheelchair full-time and usually, it can be manual but with Muscular Dystrophy that is not always a choice because you lack the strength to push a manual chair.  If you were to take Spina Bifida and Muscular Dystrophy and try to compare them you would hit a dead end because they can’t be compared. If you think you can find similarities between these disabilities I challenge to try and let me know what you come up with. I bet that you’ll come up with nothing!  To someone who doesn’t have knowledge in either of these disabilities and has seen both Karly and me hangout, it may appear that our disabilities are kind of similar but they are so far from it! Today I teamed up with my friend Karly to hopefully show you that both of these disabilities face significant challenges but are not the same.

Disease vs birth defect- Spina Bifida and Congenital Muscular Dystrophy will both be present at birth but when you have Spina Bifida you will know immediately that you have it (unless you have a very mild form that’s harder to detect) because part of your spine will be partially exposed and spinal closure surgery will be required within two to three days of birth to prevent further damage. When you have Congenital Muscular Dystrophy you will know your child has it at birth but surgery will not be required because unlike Spina Bifida where there are many surgical options that can help improve your quality of life these options are not available for Muscular Dystrophy.  You will know your child has it when they are born but it won’t be definitive for weeks or even months afterward and your child isn’t reaching the milestones that they would be reaching if the condition wasn’t present.

Degenerative disease vs constant– If you have Spina Bifida you will face challenges and be very limited on what exercises you can do but even if you have a very severe form there are still options but with Muscular Dystrophy it a little more complicated than that and sometimes you struggle more so there aren’t always options. As long as you listen to your doctor’s instructions with Spina Bifida you can stay strong and prevent osteoporosis but it’s not always so simple with Muscular Dystrophy and you may struggle more but there may be no options to make it easier. If you have Spina Bifida you may need surgery every now and then to maintain your condition but it’s not like Muscular Dystrophy and gets worse over time. People with Muscular Dystrophy start to lose the ability to do things that they were once able to do and there is nothing that can be done to stop that progression. If you have Spina Bifida working out is usually recommended but with Muscular Dystrophy, it often isn’t a reality because you lack the strength to do even basic stretches.

Powerchair vs manual-  I have been fortunate that I have the strength to push a manual wheelchair and as of right now there is no reason why I would need to switch unless I got lazy and didn’t want to which I don’t think I ever will for that reason because of the many problems you face when you have a powerchair. Manual chairs are much cheaper, lighter, and don’t break down nearly every day.  It’s not laziness for Karly but she has to use a powerchair because she lacks the strength to push a manual one.

Ability to walk vs never walked–  When I was born my feet were severely clubbed and only bent five degrees( now I can do the full ninety) that it was almost unbelievable that I would ever walk but with surgery that put my feet in the corrected position and therapy I was able to learn first with a walker and then finally graduating to crutches.  Karly has never had that ability to walk and never will because she lacks the strength to take even a small step and if she wanted to she couldn’t learn because she is unable to build that strength.  Most disabilities don’t have just one form and aren’t all the same but some may be more or less severe than others.  Some forms of Spina Bifida are more severe and will have a larger impact on your spine so walking will not be a possibility for you while others it totally can be done!  The same goes for Muscular Dystrophy some have the ability to walk it while others don’t. Having the ability to walk will depend on what disability you have and how bad you have it. Not all disabilities are the same and for some, it doesn’t matter how much you try to strengthen your muscles it will make no difference because you won’t have that ability.

Lots of surgeries vs hardly any- If you have been following this blog for any time at all you would know that I have had about thirty surgeries to maintain my condition and I am currently recovering from another one. It might have you thinking do all disabilities have a million surgeries? No, they don’t and some disabilities have a little to none while others you might need sixty plus by the age of fifteen. Karly has only had one surgery that I know of because there aren’t as many surgical options for Muscular Dystrophy as there are for Spina Bifida. How many surgeries you have depends on what disability you have and how bad you have it because even with Spina Bifida there are forms that don’t require many surgeries at all while others quite a few are needed.

Benefits from exercise vs no benefit- If you have Spina Bifida exercise will have limitations when you workout and it will be more challenging but for most people, it’s not totally out of the cards like it could be for Muscular Dystrophy. Sometimes you may only be able to do upper body training and few sit-ups but even if you are severely limited you usually can find something to do to stay active. If you have Congenital Muscular Dystrophy it will be different as you will be able to kick a ball and do some physical activity but it will not give any benefits because you can’t strengthen your muscles. Why put yourself through so much pain when you know that nothing will change? In my opinion, it’s kind of pointless and I wouldn’t do it if I knew that all my hard work was never going to pay off!

Most disabilities and chronic conditions are very different from each other and even though it looks like our disabilities could be the same this is a wrong assumption and could be totally wrong. Karly and I both face significant challenges but they, are not the same challenges, because our disabilities are not even kind of similar. She has a disease that gets worse over time and I have a permanent disability that has some physical challenges but does not get worse over time. The only things I would say both Karly and I can relate to are the challenges of being disabled and ableist comments people say against us but our disabilities are completely different and we can’t fully understand what the other is going through. We are both sympathetic towards each other’s conditions but we don’t compare them because our disabilities are not the same or even remotely comparable and the challenges we face are completely different. I hope you learned a little bit about the differences between Spina Bifida and Muscular Dystrophy and thank you Karly for participating!  If you have any questions about Spina Bifida or Muscular Dystrophy please leave them in the comments below and I will do my best to answer. 

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