Anyone else with x linked sideroblastic anemia?

Posted by ashleygm814 @ashleygm814, Jan 25 1:32pm

I have been struggling to find anyone else who has this genetic disorder. I am a 44 year old female with severe anemia and am approaching iron overload. It is affecting almost all aspects of my life at this point. It's lonely not having anyone else to talk to that gets it.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Jan 29 10:16am

Hi Ashley! Welcome to Connect. It can be horribly lonely when you feel you’re the only one with a specific illness. I’m so sorry this is interfering with your daily life and activities.

I have found several members in the forum who have been diagnosed sideroblastic anemia. From my quick search it appears that many of these cases were linked with another underlying condition.

Here is a link to my search with all the mentions of sideroblastic anemia: https://connect.mayoclinic.org/search/

Are you currently working with a hematologist who specializes in blood disorders? What type of testing has been done with your diagnosis?

yisabess | @yisabess | Feb 5 1:48pm

Hello, I was diagnosed with Sideroblastic Anemia and am wondering if anyone else has had experience with it, their symptoms, and their experience at Mayo with this disease. I have random symptoms as well and I don't know if it is the sideroblastic anemia or something else I should be concerned about. Thank you

Colleen Young, Connect Director | @colleenyoung | Feb 18 9:15pm

In reply to @yisabess "Hello, I was diagnosed with Sideroblastic Anemia and am wondering if anyone else has had experience..." + (show)

@yisabess, I moved your post about sideroblastic anemia to this existing discussion:
- Anyone else with x linked sideroblastic anemia?https://connect.mayoclinic.org/discussion/anyone-else-with-x-linked-sideroblastic-anemia/

I did this so you can connect with @ashleygm814, who has a similar diagnosis.

@yisabess, what random symptoms have you been experiencing?

ashleygm814 | @ashleygm814 | Feb 19 11:31am

I am tired, weak, brittle hair and nails. Very pale, muscle aches and heart arrhythmias. Last year I had a heart attack because my hemoglobin got so low my heart went into a extremely high and abnormal rhythm.

ashleygm814 | @ashleygm814 | Feb 20 8:29pm

Is your sideroblastic anemia genetic?

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