Life before diagnosis
I come from a large extended family and am the only one in my family that has been diagnosed with Hereditary Inclusion Body Myopathy (HIBM). I was living a healthy life before I found out about my diagnosis. I had many hobbies including exercising, dancing, singing, and drawing. In fact, I used to attend a folk dance festival every year and I loved it. At the age of 26 in the year 2011 is when I started to notice the ankle pain and it was also hard for me to get in and out of the car by this time. People started to notice I was limping as I walked, it was also at this time that I struggled to run and it was hard for me to tie my shoes as well. When I went to my physician to see what was wrong, I was told that maybe it was just because I had gained a little weight lately. I continued to go to multiple specialists until a proper diagnosis was found. By the next year (2012) it was hard for me to lift my legs. I went to a neurosurgeon, but couldn't bare the pain of the EMG, so I was not able to finish. I was living in Ohio at this time, and in January of 2013 some of my family and friends told me about the Mayo clinic in Rochester, MN. I went there and they took many tests. After many months they got the biopsy results back, and told me I had HIBM. The news was very hard on me and my family. Some of my family members were very sympathetic to me and others were not very understanding which made this news even harder for me to bare. Shortly after this time I found the HIBM Facebook group, and they were so helpful. A little later I found out about the ManNAc trial at National Institutes of Health (NIH), I worked for two years to get in, and in early 2015 was able to begin the trial. During the trial I began physical therapy and had massages which really helped. After just one year I decided to quit the trial so that I could get pregnant and have a child. I was able to have a successful pregnancy and am now enjoying my happy, healthy 9 month old baby. Even though my condition does continue to get worse, I go to weekly physical therapy and monthly massages and am able to enjoy my life very much with my husband and my daughter.
Pregnancy with HIBM
During my pregnancy:
To my surprise during my pregnancy I actually had more strength and energy than I did before or after my pregnancy. I was careful to watch my weight and I tried to eat healthy as well as go on walks. The only extra health concern I had was gestational diabetes. By the end of my pregnancy it did get a little harder to walk because of all the extra weight, but I was able to still take walks at least.
After the baby’s birth:
Because of my diagnosis of HIBM, my doctor had to deliver my baby via C-section. I was able to deliver a perfectly healthy baby. Her life, smiles, sounds, and development has brought me so much joy and happiness. This has made living with HIBM much more bearable. After delivering, I did need to take the time to rest and recover. Especially since I delivered via C-section. Fortunately my mom was able to come and stay with me during and after pregnancy. Between my mom and my husband's help I was able to manage just fine with a newborn. During this time period I noticed my arm became weaker and the pain started to increase. I am not sure the cause of this. It could be a number of different things. Either from holding my baby, lack of physical therapy or the HIBM getting worse. After three months my mom had to return home, and my pain was increasing, so my husband and I decided to hire a part time nanny to help around the house and with the baby. Now life is much better and I am able to go on living a relatively normal life. My daughter has given me more reason and hope to go on living even with this disease. She has brought new light to my life and I am so happy with my decision to go ahead and have a baby.
Our Impact in 2019
Symposium/Patient Day Attendess
Scientific Minds Engaged with GNEM & NDF
Donated & Pledges Dollars
Our community thrives when we work together. Discover how your help furthers our cause and supports our vital programs.