Living with Rare Disease and Chronic Pain: What's your story?

Posted by Faithwalker007 (Renee) @faithwalker007, Feb 13 1:21pm

Hello everyone, Renee (Faithwalker007) here. I know many have felt the impact of the “War on Opioids” and the subsequent blanket lowering of dosages of their pain medications, but I’m speaking to those who have been diagnosed or are being treated specifically for a rare disease. If you don’t know if your disease or condition is rare, go to GARD, the Genetic and Rare Disease Information Center at the NIH (National Institutes of Health website.)

Rare diseases and conditions may or may not be curable, although most are not. They may or may not involve chronic pain. However, for the sake of this discussion, we are speaking of those that are incurable and involve no cure and severe chronic pain.

THE DISCUSSION TOPIC QUESTION is as follows:

HAS THE REGULATION AND GOVERNMENTAL AUTHORITY IN THE REALM OF HEALTHCARE AND THE DISPENSING OF OPIOIDS AND PAIN MANAGEMENT IMPACTED YOUR QUALITY OF LIFE AS A RARE DISEASE PATIENT and if so, HOW? Do you have any suggestions to make?

This is RARE DISEASE MONTH and I’m determined that our battle is heard but first I need to know from you the impact .

@faithwalker007

I don’t know either but refer to the list in NORD to find out. There are over 6000 rare diseases. If it’s genetic it is probably on the list.

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Actually there are over 7000 rare diseases now.

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@faithwalker007

Actually there are over 7000 rare diseases now.

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@faithwalker007
Wow, 7000? So having some sort of rare disease is becoming more common, even though having any particular one is rare. The irony!

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@jesfactsmon

@faithwalker007
Wow, 7000? So having some sort of rare disease is becoming more common, even though having any particular one is rare. The irony!

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No they are simply finding more types of weird things out there. Scary.

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@gingerw

@faithwalker007 Renee I have an ultra rare kidney disease, called Type III Collagenofibrotic Glomerulopathy. This is a disease of the kidneys, where a type of collagen is building up on the filtering components of my kidneys. There is no school of thought where it comes from; there have been less than 50 ever diagnosed worldwide, and there is no cure. Eventually the progression is to end-stage renal disease, resulting in dialysis and transplant. I was diagnosed in early 2015 with it by Keck USC hospital, with second opinion by Cedars Sinai Hospital. Repeated kidney biopsy in late 2019 re-confirmed it. Right now I am Stage 4 kidney function.

I have no overt pain related to it, thankfully. There is nothing to be done, no cure. Because of the low number of confirmed cases, there is no research being done, as there is no money to be made there. Sad, but true.
Ginger

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Hello
I just got diagnosed with this today. Please reach out to me
I’m so scared because they told me there was no cure either

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Type III Collagen Glomerulopathy (Collagenofibrotic Glomerulopathy

I am trying to find a Doctor Who could help me with this. I was diagnosed with us today. I don’t know what to do because there is no cure and no treatment for it. Does anybody know who can help getting the protein out of the urine

I’m so scared

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@kkmommy

Type III Collagen Glomerulopathy (Collagenofibrotic Glomerulopathy

I am trying to find a Doctor Who could help me with this. I was diagnosed with us today. I don’t know what to do because there is no cure and no treatment for it. Does anybody know who can help getting the protein out of the urine

I’m so scared

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@kkmommy I just replied to you under your other post. You heard right, there is no cure, no treatment, but there is nothing to say you cannot live a good long life. It takes being aware on your part, and having a great nephrologist. Your kidneys are not able to return protein to your system because the filtering components in your kidneys are being blocked.
Ginger

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