Holly at 2007-08-28

says:

Hello!

I'm sorry to learn of your recent diagnosis. I'm a doctor, so I am familiar with this disease, though only from textbooks, I'm afraid. It's quite rare, as you know!

I am intrigued that you were only recently diagnosed with it - I was under the impression that it needed to be diagnosed very early in life to prevent severe mental retardation - which clearly you haven't suffered from (fortunately)!

I live in Canada, and we do have what is called a Special Dietary Allowance benefit that is payable to anyone with a disease that requires special foods. I fill these applications out for people all the time. There are different amounts of money allocated depending on your condition and the costs it's likely to entail. Yours would most certainly qualify, and in fact, you would probably qualify for the highest amount of coverage, because your condition is so diet-dependent.

I'm afraid I don't know what the US (or specifically, California) offers - if anything. Canada has a lot of problems, just like everywhere, but one area where we do excel is in taking care of our sick (which is all of us, eventually). In Canada, you cannot be refused any medication or treatment (including dietary treatment), regardless of cost.

For example, a good friend of mine has severe Crohn's disease and is on disability - granted, it does not pay much, but it's more than welfare (social assistance). Her drugs are extremely expensive (about $7,000 every 2 months) and while she doesn't require a special diet, she does benefit from one. Although there is a lot of paperwork involved, and although many people try to "work the system," the system does work for the very ill like my friend.

It's bad enough to have to deal with a serious illness - worse still to have to worry it's going to bankrupt you. The stress of that alone is certainly not conducive to staying well.

I was diagnosed with an inflammatory arthritis 3 years ago just as I finished medical school, and it was also a real shock. Fortunately, I had a lot of private insurance coverage which has made it possible to take time off as needed. However, it's an adjustment to think of myself as no longer completely "well."

I send my support and best wishes out to you as you adjust to your new diagnosis. Remember that nothing has changed about you - you are not your disease, it's just a small part of you, and one that will hopefully get easier to cope with over time.

Perhaps you can find a PKU support group in California; they might have information on any disability benefits you might qualify for. If not, they might at least have suggestions on how to manage the disease as economically as possible, and offer ideas and support from others coping with the same illness!

Likely you know of these organizations already, but I looked them up anyway (sometimes I would get grumpy about my own condition and not bother!):

1. California Coaltition for PKU and Allied Disorders: 

http://www.pkuparents.org/

2. The Mid-Atlantic Connection of PKU and Allied Disorders:

http://www.macpad.org/ 

The one positive thing that jumps out in looking on the internet is that it seems to be an illness which is very well "organized" in the sense that there's lots of support and information out there. It may well be that this community already knows of how you may go about qualifying for benefits!

Best of luck to you!

Holly