Rare Is Not A Good Thing When You’re Sick!

Product Description

Houston, Texas, United States

Supporter

A broken foot. A baseball to the head. A heart attack. These are not things that are in your budget plan. Many have insurance, but you still have to pay your portion which can put a dent in your wallet. Now imagine breaking a bone every month. ER costs, lab and x-ray bills, possible surgery bills, specialist copay, physical therapy. Unimaginable, right? For those with rare and chronic illness, that’s normal.

That trip to the emergency room for most means using the credit card, maybe not going out to eat as much over the next couple of months, or dialing down the vacation in the summer. Most of us with a chronic illness either work very little or are unable to work at all. We rely on disability (from past jobs or social security), only have one income coming in our borrowing it from friends and family. Some get creative and bake, paint, draw or some other activity to make a few extra dollars. For many, it’s the ER or a car payment, a very harsh reality. I’m in that spot now!

When you hear chronic illness it means an illness or injury that lasts longer than 3 months. Most have been dealing with these issues for years (take something like bronchitis or COPD) with many trips to your doctors and pulmonologist, the occasional ER visit. Still a financial strain, but at least they know what you have!

A rare disease is on defined by the number of people it infects. The fewer patients, the more rare the illness. We’ve all heard of ALS / Lou Garherig’s disease from the viral ice bucket challenge. To give you a yard stick, a headache is common, most everyone will get one at one time or another. About 14% of the population suffer from migraines, but only 2% from IIH and 0.7% from ON. Also, the rarer the illness, the less funding goes to research and patient assistance.

What this fund’s aim is to help those in exactly this spot and not have to jump thru a dozen hoops to get the help they need. Navigating the muddy waters of available assistance then only to be told doctors notes, months of bank statements, eviction notices, priorities, location, releases and on and on are needed. Then a six to eight week wait on approval and then perhaps 3 more months before funds are available. By then, many have lost their car, home or even their life.

When you need help, it’s hard enough to ask. Adding the struggle of an illness and managing the medical minefield can just drain a person. On facebook groups and chat boards we share experiences, references, successes and disappointments. We support each other. Sometimes that includes sending a gift card for a pharmacy so medications can be purchased, or $10 thru PayPal so milk can be bought for the kids. We offer what we can, from ideas to places to stay when traveling out of town for a medical appointment. This fund will do just that. There is so much need and so few resources. We will be distributing funds in various forms, from gift cards to direct bill pay. As we build this fund, we will try to help when we can, where we can with anything we have available.

You can be a part of this amazing group of survivors by supporting this campaign. All funds will go directly to helping individuals with IIH, Debilitating Intractible Migraines and Occipital Neuralgia. We will help these individuals with immediate needs, such as food, medication, premiums, ER costs, transportation and shelter.

There are some amazing people with these debilitating conditions that are talented, intelligent and determined. We are currently gathering some great perks for supporting us. Please check back regularly to see what we have available!

Anonymous

6 years ago

$5

Ula Baldwin