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Anyone in the World ever heard of or diagnosed with Hemaglobin Sabine?
Blood Cancers & Disorders | Last Active: Mar 19 12:08pm | Replies (11)Comment receiving replies
We actually have traveled out of the state several times to larger scale hospitals but the only sort of "help" we ever got was to start on the HU. Which I am almost completely against, due to the possible long term side effects as well as her being the only known person to have this disorder, the possibilities are unknown as far as what could happen to her. I much prefer natural medicines, but I have yet to know or heard of anything to help her with her kind of condition. She definitely needs help, she complains about hurting every day. I feel like a bad mom because I don't know what to do to help her.
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Oh gosh, @suanne90, you’re in a quandary for sure. Being a parent is such a hard job! Please don’t let anyone make you feel like you’re a bad mom for not knowing what to do for your daughter. There are few parents faced with decisions this heavy…so you’re running on gut instinct in order to protect her. Please be gracious with yourself…
I’m all for natural remedies too, when they may be an acceptable option for treatment. But at this time there doesn’t seem to be a natural route for your daughter.
Several doctors have recommended HU as a treatment for her. I understand you’re concerned about possible long term side effects from the medication.
But from what you’ve said, isn’t her disease itself life threatening? So maybe it’s worth a try taking the HU for a couple of months to see if it improves her blood numbers? Who knows, it may actually help her. She can always stop the med. HU has been used for decades to treat blood disorders. I know it’s classified as a chemotherapy drug but it isn’t the same class as the aggressive chemo used in cancer infusions. There are members in the forum on this drug for decades with minimal side effects. I know you’re struggling with this decision. Have you been able to talk this over with family members or doctors to work through the anxiety of starting the medication?
I’ve had to take many rounds of intensive chemo and had a bone marrow transplant. So I’m asking this from a place of experience…what is your greatest fear of your daughter taking Hydroxyurea? When you say long term side effects, what are you most worried about?