Tagged: cost of living with MD, disabled cost of living, economic burden of MD, how much does it cost to be disabled, Living with a disability, living with MD, muscular dystrophy is expensive disease
- This topic has 2 replies, 2 voices, and was last updated 8 months, 3 weeks ago by Danielle “Dani” Liptak.
July 21, 2022 at 8:28 am #18090Danielle “Dani” LiptakParticipant
What is the actual cost of living with something like muscular dystrophy? Each person experiences MD differently, and the prices can differ as well.
Here are some examples of the “Cost” of living with muscular dystrophy:
- Unreimbursed medical expenses (not paid for by health insurance). These include co-pays, nonprescription medications, etc.
- Living expenses that someone without MD would not have to pay. For instance, this could be costs to install a ramp, safety bars, or convert a van to accommodate a wheelchair.
- Extra costs or reduced opportunities regarding school and work.
- Unpaid caregiving help from family members.
- Other expenses and costs to patients with MD and their families.
What are some other “costs” that you would include?
I have attached an article by our columnist Hawken Miller. Give it a read, tell us your thoughts, or add more in the comments. Hawken Miller: Economic Burden Article
July 22, 2022 at 10:13 pm #18096Gail SullivanParticipant
for me it’s getting me out of the house to somewhere else like the dentist. I have to hire an ambulance taxi. My dentist is 15 miles away from my house and last Thursday it cost me over $800 to go to the dentist and back home. I can’t afford to spend this kind of money to go to the hospital for test or to the dentist. However there’s no other way for me to get to either place and there’s no refunds whatsoever from the government.
September 13, 2022 at 11:14 am #18173Danielle “Dani” LiptakParticipant
Wow. There is no way I could ever afford that! I am thankful to have my own transportation, but to hear that you must go to the dentist and pay that much for a vehicle! It is SHOCKING. On top of that hearing, you don’t get any refund or insurance coverage for it. I wonder if other members have the same experience as you! Where are you located, if I may ask?
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