Do you or someone close to you have a rare condition called hATTR amyloidosis ? Then, going to the doctor is probably a normal part of your life. But every time we go to the doctor, it is very important to make the most of that visit. The best way to do that is to prepare a little before going to the doctor. When you go to the doctor in this way, you will feel relaxed and it will also help the doctor decide on the most suitable treatment for you. Let's see how to prepare for this exactly?
First, let's understand, what is hATTR Amyloidosis?
Simply put, hATTR is a rare disease that is inherited, meaning it is passed down through genes in families. To be precise, it is one of the types of diseases called Transthyretin Amyloidosis (ATTR). This disease can get progressively worse over time, so it is very important to diagnose the disease and start treatment as soon as possible .
This disease can affect multiple organs in our body, so you may need to see several different specialists instead of just one. For example:
- Cardiologist
- Hematologist
- Neurologist
Not all of these doctors work in the same hospital system. So don't assume that your information given to one doctor is available to another. Sometimes, because hospitals' computer systems aren't connected, your medical records aren't shared. That's why it's important to bring your information with you to every appointment.
Things you should definitely bring when you go to the doctor
Even if your doctor has your old medical records, it's a good idea to bring the latest information with you to every appointment. It will be a great convenience for you to have these things organized and ready in one file.
| What to prepare | Details to include |
|---|---|
| A list of symptoms | Write down all the symptoms of hATTR that you are experiencing. For example, vomiting, dry eyes, black spots floating in front of your eyes, weight loss, feeling full even after eating a small amount of food, swelling in your legs, carpal tunnel syndrome. Also, tell your doctor about any rare symptoms such as headaches, stroke, memory loss, or seizures. Symptoms can change over time, so tell your doctor about any changes. It is important to tell your doctor if you have any other symptoms that you think are not related to hATTR. |
| Medicines, vitamins and supplements | Write down every medicine, vitamin, and supplement you take. Include the dose, the times you take it, and the pharmacy that supplies it. If there are any medications specifically for hATTR (e.g., eplontersen (Wainua) , inotersen (Tegsedi) , patisiran (Onpattro) , tafamidis (Vyndamax) ), be sure to write them down as well. Even over-the-counter medications like Panadol and Vitamin C can be included in this list. |
| Your and your family's medical history | Tell your doctor about any other medical conditions you have (e.g., diabetes, high blood pressure), and any surgeries you have had. Most importantly, tell your close family members (parents, siblings) about any medical conditions you have. If anyone in your family has hATTR, tell them what the main symptoms were. |
| Test Results | Bring all test results related to hATTR. These include blood tests, neurological tests, heart tests (ECG, Echo), MRI scan reports, and biopsy reports. Especially, if you have any tissue samples taken from your abdominal fat pad biopsy or other organs, be sure to bring them. |
| Genetic Test Results | This is the most important report. Be sure to bring the original genetic test report that confirmed that you have a mutation in the Transthyretin (TTR) gene. If anyone in your family (parents, siblings, children) has had genetic testing for hATTR, it is worth bringing those reports with you as well. |
| A list of questions to ask | You may forget what you want to ask the doctor. So, before you go, write down any questions you have on a piece of paper. Also, bring a notebook and pen to write down what the doctor says. If you find it difficult to do these things alone, don't be afraid to bring a trusted family member or friend along for help. |
Why is it so important to prepare in this way?
Imagine, all these detailed details you provide are like a picture to the doctor. It helps him gain a complete understanding of your health condition. Only then can he suggest the most suitable and accurate treatment for you.
As mentioned earlier, information is not always shared between hospitals. So don't assume that your doctor knows your medical history. It's best and safest to bring your own information.
If you take a little effort and prepare before you go to see the doctor, you can get the most out of that appointment. It will be a great help not only to you, but also to the doctor who is treating you.
Take-Home Message
- Every time you go to see the doctor for hATTR, prepare for it in advance.
- Keep your symptoms, all medications you use, test reports (especially genetic test reports), and family medical history in one file.
- Write down your questions on a piece of paper beforehand, as you may forget them. Don't be afraid to bring someone along for help.
- The information you provide will greatly help the doctor understand your condition and provide the best treatment.
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