HCM-ers: Introduce yourself or just say hi

Hello there Leo @ochmnot22, and a warm welcome to Mayo Clinic Connect!
I am so glad you found this site. You will find a lot of information from other people with HOCM on here, and learn you are not alone. That is such a great feeling, because like you said, you don't know anyone else with this condition.
You mention you were diagnosed two years ago...were you diagnosed right away, or did it take time to find the correct diagnosis?
Are you an active person? How has having HOCM affected your lifestyle?

Good evening everyone. I am Leo from London. I was diagnosed with OHCM at 38 years old over 2 years now (hereditary but no history of diagnosis or SD in family). I am so pleased to learn of this group and looking to be apart of it. I have done a lot of reading don't know anyone else with the condition.

Hello @jachrist,

You may find the following discussion helpful:

- Stiff Person Syndrome: Want to connect with others
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/
@jachrist, how are you currently doing with your symptoms? Have you had your appointments yet? If so, how did they go for you?

@ache6941 if traveling to Mayo Clinic in the US is an option for you, you can submit a request here: http://mayocl.in/1mtmR63

For care closer to Ethiopia, you might have options with the Mayo Clinic Care Network. The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist.

See hospitals associated with the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

In particular:
Saudi German Hospital Cairo https://sgheg.com/sgh/#/sgh/en
Egypt

Saudi German Hospital Riyadh https://riyadh.saudigermanhealth.com/ar
Saudi Arabia

International Medical Center https://www.imc.med.sa/ar
Saudi Arabia

People travel to Mayo from all over the world. Does anyone know how to contact the people who take a referral for surgery - from reviewing a case to financial help - before the concierge service can do their part? (Somehow this post originally appeared as a response to another topic. Must've not been paying attention.)

Thank you so much for your kind words. It makes me feel better to know I am not alone. Living with HCM is very hard. I have shortness of breath, feel very tired, and cannot do my daily work.
I see my heart doctor every three months. He told me I need open-heart surgery (myectomy or alcohol ablation). If not, I need Mavacamten. But in my country, no doctor does this surgery, and the medicine is not available. I only take beta blockers, 100 mg twice a day.
My health is getting worse. Breathing is difficult, and I cannot do my normal activities. I want to know how I can get treatment at Mayo Clinic. How can I get admission? Please, if you have any information, tell me. I need help to get better!

I am so glad you found this support group @ache6941, you are certainly not alone!
The HCM/HOCM group is pretty active and shares a lot of information with each other. This helps in multiple ways, one being you may learn something you did not know, and another is you will find you share so much in common with others and you are not alone in your symptoms or your journey.
It is difficult to explain to someone who does not have this condition what it is like to live with this condition. The shortness of breath. Rapid, racing, pounding heart rate. Fatigue. Inability to do routine tasks or activities. Chest pain/burning. I could go on...there are many more symptoms.
Mayo Clinic Connect is unique for it's moderated content, it's members are patients or caregivers, and the warm and welcoming community where you are free to share with others.
Is your cardiologist in Ethiopia up-to-date on Hypertrophic Cardiomyopathy? Are you able to travel to the Mayo Clinic for a second opinion? People from all over the world come to the Mayo Clinic for the best care on the planet for many complex cases such as HCM/HOCM.

I feel like I am alone in this journey. Thank you for creating this group. In my country (Ethiopia, Africa), I have never met other HCM patients, and I have never received advice from real patients who understand what I am going through. It is very hard because the treatment here is also poor.

Hello @bbuck, Brenda. Welcome to Mayo Clinic Connect.
You posted in the Hypertrophic Cardiomyopathy (HCM) support group, is this what brings you to Connect?

Hi,
I'm Jim
I'm a HOCM patient that had alcohol septal ablation and now I have stiff heart syndrome as well. I have more appointments at the Mayo in the next few weeks.