Finding a doctor who is right for you and who understands you can sometimes be a bit difficult. We are all different, with different needs and preferences. So if you have a rare condition like hATTR Amyloidosis , you might find it even more complicated. When treating a condition like this, it is essential to find a doctor who has a good understanding of the disease and who will provide you with the level of care you need. In fact, to get the best treatment, you need to find several specialists in different fields.
What kind of doctors treat hATTR?
Simply put, hATTR amyloidosis is a rare disease that can affect multiple organs in your body at the same time. This means that you won't be able to get treatment from just one specialist. You will need the support of a multidisciplinary team.
For example, if your heart is affected by this disease, you will need to see a cardiologist. On the other hand, if you have a neurological problem, such as numbness or weakness in your legs, you will need to see a neurologist. So, the symptoms you are experiencing, the organs affected, and the extent of the damage caused by the disease will determine which specialists you should see.
In the table below, we will see which specialists are most commonly needed in hATTR disease and what types of symptoms they treat.
| Specialist medical field | Common symptoms/conditions they treat |
|---|---|
| Cardiologist | Weakened heart function (Cardiomyopathy), heart rhythm irregularities, breathing difficulties. |
| Neurologist | Numbness, tingling, pain, and loss of sensation in the limbs (Peripheral Neuropathy). |
| Gastroenterologist | Stomach pain, diarrhea, constipation, weight loss, nausea. |
| Nephrologist | When the kidneys are affected (e.g. protein in the urine). |
| Ophthalmologist | When the eyes are affected (e.g. increased eye pressure, blurred vision). |
| Genetic Counselor | Since this is a hereditary disease, families should be advised about the risk and genetic testing. |
Your symptoms may depend on the specific mutation in the Transthyretin (TTR) gene that causes the disease. This will determine what kind of doctors you need. You may also need to see other specialists if new symptoms develop over time as the disease progresses.
How to find a hATTR specialist in Sri Lanka?
When treating a rare disease like this, it is very important to receive specialist care. In Sri Lanka, the best way to do this is to go to a large hospital where several specialists work in one place.
Usually, in large government hospitals like Teaching Hospitals and National Hospital of Sri Lanka, specialists in various fields come together to treat patients. Some large private hospitals may also have this facility.
Your first step on this journey should be to see your family doctor (GP). He or she can refer you to the most appropriate specialist or a hospital with a team of specialists, depending on your symptoms.
The advantage of receiving treatment at a center like this is that all of your medical records are in one place, so doctors can easily discuss your condition with each other and develop the best treatment plan. You may also have the opportunity to learn about new treatments or clinical trials.
Will I still need my family doctor?
Yes, absolutely. Even if you have hATTR, your primary care doctor is very important. He or she is the center of your health. It is very important to have good communication between your team of specialists and your family doctor . Don't forget to inform your family doctor about everything you have seen, treated, tested, etc. Also, give copies of your specialist reports to your family doctor.
How do I coordinate my treatment with multiple doctors?
Although this may seem like a bit of a challenge, it's very easy if you plan ahead.
- Keep your own file: Keep all your test reports, prescriptions, and instructions in one file. Maintain a clinic book.
- Keep everything informed: Tell every doctor you see about any new symptoms you develop, or if an old symptom worsens.
- Ask questions: If there is something you don't understand, don't be afraid to ask your doctor again. It is very important that you have a good understanding of your disease and treatment.
How do I choose the right doctor for me?
You need to have a good relationship with the doctor who is treating you, because this is a long-term journey.
It is your right to choose a doctor who listens to you, treats you with respect, and understands what you are saying.
You may prefer a doctor who is your own gender. Or, you may prefer someone who explains things in a way that you can understand. When dealing with a hereditary condition like this, it's important to see a doctor who can guide you through how it affects other family members and what tests they may need.
If you don't feel comfortable with the first doctor you see, don't worry about it. There are other good doctors who will be a good fit for you and understand your needs. Do some research and find the best doctor for you.
Take-Home Message
- hATTR amyloidosis is a disease that affects multiple organs in the body, so you will need the support of a team of doctors with expertise in various fields.
- The first step in your journey should be to see your family doctor (GP). He or she will refer you to the appropriate specialists.
- It is essential to maintain good communication between all the doctors who treat you. Keep all your medical records in order.
- Take the time to find a doctor who listens to you, respects you, and explains things to you simply. Seeking treatment with a doctor you feel comfortable with and trust is also very important for your mental health.
- Remember that you are not alone in this journey. With the guidance of the right medical team, you can live successfully with this condition.
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