My daughter Sophia is currently six months old and was diagnosed with Turner Syndrome at two months of age. We noticed in May that her hand and foot had started to swell. I mentioned it to her endocrinologist who did not take it seriously. My husband and I were told that she would outgrow her lymphedema by age two.
However, her hand and foot became more swollen. I called her endocrinologist and left a voicemail. However, they never called back and instead I received a letter in the mail stating yet again that the condition was not serious.
I then contacted her pediatrician. Again, my concerns were not taken seriously and I was told that they could not find a medical supply company to measure Sophia for compression garments.
Finally, I found a lymphedema specialist in our area. Sophia goes once a week for a lymphedema draining massage and we have measured her for compression garments. The specialist gave us a medical wrap to help her lymphedema until her garments come.
I would absolutely love to be involved and help people with lymphedema in Pennsylvania with your wonderful program. Thank you so much taking the time to hear Sophia's journey.