Alex and Diana from Klurfeld Cares give tips on how to talk to your doctor about your rare condition

After years in the healthcare industry, the two philanthropists were tired of hearing patients asking for referrals because their current doctors didn’t know what to do with their symptoms.

Alex Klurfeld is a physical therapist, entrepreneur and philanthropist who, together with his wife Diana, devotes time to finding articles and information on research and advice on rare diseases to fill the current gap in the medical community.

Lack of research funding is another problem, but we are just trying to solve the problem of lack of information sharing, which is unforgivable. Today, the couple is seeking to raise awareness of issues that have been hidden from view.

Getting a diagnosis for a rare disease shifts your world on its axis. This is a difficult and difficult time for everyone. Many patients have questions and concerns, but find it difficult or intimidating to talk to their doctors about it.

It is important that you feel comfortable enough to openly ask your doctor about your concerns and feelings. Your doctor can only treat you effectively if he knows what’s going on. Here are some tips to help you talk to your doctor about your rare condition.

“Patients with rare diseases value honest and open communication with their doctors.” Diana Klurfeld organizer for Klurfeld Cares


“Judge a person by his questions, not his answers.” Voltaire

Take some time the day before the meeting to prepare a written list of questions and concerns. If you have a list of questions and concerns to bring with you, you are less likely to forget what you want to talk about when you find yourself in the doctor’s office.

If you are too nervous to start a conversation, you can refer your written questions to the nurse before the doctor enters the room. “The nurse will ask your questions to the doctor, and then he can answer them and discuss your concerns during your visit,” says Alex.

Some patients find it difficult to decide what questions to ask their doctor. Here is a list of common questions asked by rare disease patients.

• How does this disease affect my body? • Is this rare disease progressing? • What treatment options are available to me? • What are the possible side effects of this medication? • How will the development of the disease affect my life? • Can I continue to have sex? • Is my disease genetic? • It’s contagious? • Will my children get the disease? • Can I have children? • Is there a cure for my illness? • Is this disease incurable? • Can I continue to work? • What exercises are safe for me? • Are there homeopathic remedies that can relieve my symptoms?

There are no questions too stupid or uncomfortable to ask your doctor. You don’t shock them. Your doctor wants to answer your questions and values ​​open communication with you.


It is helpful to bring a trusted friend or family member with you to your doctor’s appointment. According to Alex Klurfeld, “Patients have told me that sitting in a doctor’s office may make you feel overwhelmed with information.

It is easy to miss or forget something said. Taking someone with you will help carry the information load. ” Someone else is listening to the same information. It also gives you someone to discuss the appointment with. They can listen to your questions or concerns and give their opinions.

“Patients who have a strong support system for friends and family tend to have a better quality of life and better adhere to their medication protocols. They also have better mental health. ” Diana Klurfeld, Klurfeld Cares


Wear clothes that give you confidence. This sentence may sound strange, but it can actually help you feel more comfortable talking to your doctor. Everyone has clothes in their wardrobe that we only wear around the house.

These clothes are comfortable to wear and may even evoke nostalgia (like the worn-out sweatshirt you wear on Saturday morning). As comfortable as it is, this garment will not make you straighten up, give your stride a special meaning, or inspire you to feel confident.

Diana Klurfeld suggests wearing clothes that make you feel like you can conquer the world. If you think makeup gives strength, wear it. Get your hair done if you like it. You dress to impress. Clothing has been proven to affect our mood and how we see ourselves. Dress for confidence.


Doctors have a busy schedule. Thanks to this, you get a lot of information in a short period of time. Take a notebook with you and write down what your doctor says. You can also ask your doctor to write down important things if it is better for you. Having a written protocol will help you remember what was said at the appointment and allow you to come back to it later.

Recording what is discussed also makes it easier to discuss the meeting with the rest of your caregiver.


“This is the essence of science: ask a daring question and you are on your way to the right answer.” Jacob Bronowski

Don’t be afraid to ask any questions or concerns you may have about your doctor’s treatment plan. Your doctor wants the best for your health, but they don’t live in your body. If you are concerned about any medications or treatments that your doctor has recommended, talk about them.

You are the one who lives your life and is being treated. Don’t be afraid to voice your opinion. You are the best advocate for yourself.

Referrals and links

Ask your doctor what reference materials, brochures, and websites can help you learn about your medical condition or treatment protocols. If your child has a rare medical condition, set an example and show him how to deal with it.

You can also ask them to suggest support or advocacy groups for people diagnosed with the same rare condition as you. Support groups are an invaluable resource. A rare disease can be very isolating. Support groups can ease loneliness and isolation a little.

Second opinion

You and your doctor may disagree about your course of treatment. In this case, it is customary to ask the opinion of another person. It is very important that you feel comfortable with your prescribed treatment protocol. If you suspect it or feel uncomfortable, you are more likely to miss or stop taking your appointment.

Your doctor is a professional and will not get angry or disappointed if you ask for a different opinion. Your health is more important than any awkwardness you might feel asking for a different opinion.

“When someone has a rare disease, getting a second opinion is like brushing your teeth. This is a regular part of your day. Thirty-five percent of people with a rare disease are misdiagnosed before they get the correct diagnosis. Therefore, they trust their doctors, but they always check them. ” Diana Klurfeld


While at the office, schedule your next appointment and mark it on your phone calendar. This will reduce the anxiety associated with having to call back and schedule a new appointment. It will also allow the person you bring to meetings to create their own schedule to be there again. If possible, it is helpful to have the same person attending your meetings. This allows you to be a consistent person who knows what’s going on with your health care. It also saves you time and energy as you have to clean up the new person at every meeting.


“The more you praise and celebrate your life, the more there is to celebrate in life.” Oprah Winfrey

Assign a reward after the meeting. You did it! You have asked difficult questions. It’s time to reward yourself. Have lunch with a friend when you’re done, get your nails done, read a book, or go to the movies. Do something to reward yourself for doing something difficult. You deserve a holiday.

When you have a rare disease, there are many difficulties, many painful things, and a lot of work. So make room in our lives to celebrate even small victories. It is during times like this that life becomes fun. Allow yourself to have some fun. Be proud of your accomplishments. You deserve a party!


“The relationship between doctors and their patients is sacred. The fact that a person trusts another to keep their body healthy and sane is a gift that should not be taken for granted. ” Diana Klurfeld

Talking to your doctor about your rare condition can be daunting. But using these tips can make it less difficult. Your doctor wants to provide you with the best medical care they can. They like it when patients are open and honest about their questions and concerns. Open communication makes it easier for them to get their jobs done.

“Your concerns, concerns and questions are very valuable. You shouldn’t be ashamed of them. You only have one life and one body. You need all the information you can get to make the best decisions available to you about your care. Before talking to your doctor, please share your concerns with the appointment support specialist if it makes you feel more comfortable. ” – Alex Klurfeld

The information in this article is not intended for diagnosis or treatment. It is intended for informational use only. We are not doctors. Please talk to your doctor before making any decisions about your health.

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