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Old 03-19-2021, 05:57 AM   #1
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Default Rare Disease Truths

Rare Disease Truths

I’m very frustrated. Thursday, March 18th 2021, an urgent care clinic told me to go to a local hospital. The urgent care- was not able to help with the my Chronic Idiopathic Urticaria flare up.

Local hospital- Nurse practitioner did not know what to do and just checked my basic vitals.

Male medical doctor- Verified my vitals. I was asked multiple times if I fell, hit my leg or was hurt by someone. 🙄 Me: “No, it’s called Chronic Idiopathic Urticaria. This just happens to be the worst flare up I’ve ever had.”

Female medical doctor- Had a little knowledge. She was aware that dexamethasone, prednisone and triamcinolone would not help at all. The first two would only cause weight gain. She failed to know that also offering to give me hydroxyzine (which I do take for emergency 🚨 flare ups) would be a horrible idea being that I was at the hospital alone. Hydroxyzine- is a antihistamine generation one sedative. 😐


In the U.S., any disease that affects fewer than 200,000 people is labeled as rare. There are more than 7,000 rare diseases and “one in ten Americans are suffering from rare diseases, 300 million people worldwide.” Many of us have several rare diseases, so today we come together to show that: “Rare is many. Rare is strong. Rare is proud!” (raredisease.org) •

Why is a rare disease label even necessary? •

This definition was created by Congress in the Orphan Drug Act of 1983. “Rare diseases became known as orphan diseases because drug companies weren’t interested in adopting them to develop treatments.” The Orphan Drug Act created financial incentives to encourage drug manufacturers to study and develop new drugs for rare diseases. The rare disease definition was needed to figure out which conditions would qualify for the new incentive programs. (raredisease.info.nih.gov) •

Besides dealing with their specific diagnoses and medical issues, people with rare diseases still struggle to get a diagnosis, find information and get appropriate treatment. “Researchers have made progress in learning how to diagnose, treat, and even prevent a variety of rare diseases. But, there is still much to do because most rare diseases have no treatments.” Spreading awareness inspires research, which, in turn, brings hope.
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Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old 03-19-2021, 06:11 AM   #2
Cocosurviving
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Default Re: Rare Disease Truths

I’ve been asked about getting a Covid-19 vaccine by my primary care provider and new immunologist.

My thoughts: First let’s focus on assisting me with my current chronic illness flare ups. Rare Disease Truths

I’ve been thinking Rare Disease Truths about it however I’m not interested in opinions from able bodied people or individuals without the exact rare diseases and autoimmune diseases that I have. Our situations are not the same.
__________________
#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old 03-20-2021, 10:54 AM   #3
ArtleyWilkins
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Default Re: Rare Disease Truths

My husband has Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.

We have learned that last place we take him for issues related to RSD is an ER. His pain specialist gave me his personal cell phone number in case of an emergency where I think his input is needed. I didn't use it until this last month.

The problem we most often encounter is when he has to be treated for something completely unrelated to RSD. The general medical community doesn't know much about RSD, and even less about how an intrathecal pain pump works, so they make very incorrect assumptions about his morphine pump. They constantly want to touch his foot to check pulse no matter how many times we tell them not to touch. They truly have no concept of the level of pain he lives in on a daily basis.

He's currently in the hospital recovering from COVID, and has been since the end of January. It is a constant battle. For the first month, I couldn't see him, and getting clear information to the medical team was almost impossible. I have always stayed with him 24/7 during any hospital admissions just to advocate for his proper care, and not being able to be there at all was awful. It's better now that I can get up there almost every day to see him, and I have done A LOT of educating of his doctors and nurses and physical therapists. I've also been doing a great deal of coordination of care with his pain specialist. I'm pretty fierce in my advocation for his proper care because he often isn't when left on his own. Fortunately, the current medical team has been listening and learning and doing their best to respect his disease.
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Old 04-02-2021, 03:49 AM   #4
Cocosurviving
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Default Re: Rare Disease Truths

I’m currently restricted from running Rare Disease Truths however have been walking 15-20 minutes. My new immunologist is out of state. The other immunologist in the practice, I wanted to see to begin with. She was out with COVID and just returned to the office. I had an appointment with her yesterday. We have a game plan and now waiting on lab results.

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__________________
#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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Old 04-02-2021, 03:56 AM   #5
Cocosurviving
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Default Re: Rare Disease Truths

Quote:
Originally Posted by ArtleyWilkins View Post
My husband has Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.

We have learned that last place we take him for issues related to RSD is an ER. His pain specialist gave me his personal cell phone number in case of an emergency where I think his input is needed. I didn't use it until this last month.

The problem we most often encounter is when he has to be treated for something completely unrelated to RSD. The general medical community doesn't know much about RSD, and even less about how an intrathecal pain pump works, so they make very incorrect assumptions about his morphine pump. They constantly want to touch his foot to check pulse no matter how many times we tell them not to touch. They truly have no concept of the level of pain he lives in on a daily basis.

He's currently in the hospital recovering from COVID, and has been since the end of January. It is a constant battle. For the first month, I couldn't see him, and getting clear information to the medical team was almost impossible. I have always stayed with him 24/7 during any hospital admissions just to advocate for his proper care, and not being able to be there at all was awful. It's better now that I can get up there almost every day to see him, and I have done A LOT of educating of his doctors and nurses and physical therapists. I've also been doing a great deal of coordination of care with his pain specialist. I'm pretty fierce in my advocation for his proper care because he often isn't when left on his own. Fortunately, the current medical team has been listening and learning and doing their best to respect his disease.

Hērscē ArtleyWilkins,

I’ll definitely keep your husband in my thoughts. It’s very difficult receiving proper care with rare diseases. On March 18th 2021, I was given the wrong medication at a local ER. I’m always asked to spell my rare diseases and asked what medications I usually take. What has been helpful to me, I registered with a national organization for one of my rare diseases. I have a patient support representative assigned to me. She also speaks with hospitals about leaving about HAE (Hereditary Angioedema).

Sent from my iPhone using Tapatalk
__________________
#SpoonieStrong
Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day.

1). Depression
2). PTSD
3). Anxiety
4). Hashimoto
5). Fibromyalgia
6). Asthma
7). Atopic dermatitis
8). Chronic Idiopathic Urticaria
9). Hereditary Angioedema (HAE-normal C-1)
10). Gluten sensitivity
11). EpiPen carrier
12). Food allergies, medication allergies and food intolerances. .
13). Alopecia Areata
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