Thank you for sharing your story bc I was diagnosed when I was 5 ( 45 now) and they called it or...how my dad use to tell me, " a low blood platelet disorder." It wasn't until this last 5 years that I've had more information on ITP. I think I go into remission once in a while but have always had hematoma's on my legs pretty much all year around and extreme fatigue. I hope to someday be able to afford treatment.
My husband has an ITP story after being diagnosed at age 2, spleen removal, heavy steroids, remission at age 17, relapse at age 50, hematologist with many treatments some worked but eventually kept dipping to 3,4,5K, trying to live with medications that made him so miserable, we traveled to seek out the best Drs, St. Louis, the Oklahoma City, with no answeres, I have always been a huge advocate of nutrition as 1st line of defence, and healthy eating, so we began experiminting with building gut health and a gluten free diet. This has helped him to lead a more normal life at age 70, will keep doing what hes doing and keep looking for new ideas! God bless everyone out there with this disease, its so hard on all family members and not much hope from mainstream medical, keep looking, searching and sharing!
Im taking doptelet 20 mg 2 times a week for almost 2 years and my platelets is up and down i went several times to hospital ntransfused IVIG n platelets infusion
Thank you for this. I was diagnosed in 1979 and was on steroids for a couple of years, but kept relapsing. Eventually my count dropped to 2,000 and I was told that I had to have a splenectomy which I was pleased about, so much so that I was singing in the operating theatre (for a few secs). My recovery was great and my platelets went to 300,000 and they have stayed that way for the last 35 yrs. BUT, I started having bouts of pneumonia and then was diagnosed with a serious lung disease leading to the removal of an entire lobe in my lung. Then about 10ths after that I developed a neurological/immune disease which has left me mostly housebound. I cannot say that these 2 further diseases are caused by the splenectomy, however my Drs all have their suspicions. The Dr never explained about the downside of a splenectomy, however I guess that I had no choice way back then. I wish you the best of health!
I have this. It comes and goes. I've learned to live with it. Im 60 and refuse to see the doctor. I suffer from the steroids they kept giving me and they want me to take more. Not a chance..oh well..my itp is idiopathic..they don't have a clue why i have it..
My blood was tested and fine 2 weeks before my first mRNA vaccine. Within 4 months of the first and only shot I regrettably submitted to I had low platelets that have never returned to normal. I’m currently at 70,000 and await a referral to a platelet specialist clinic because my Hematologist is too busy with the increase in blood cancer patients. My country is highly vaccinated and currently has a 17 % increase in all cause mortality excess deaths as of December 2023. Very few are Covid related. Make your own conclusions.
Thank you for sharing your story bc I was diagnosed when I was 5 ( 45 now) and they called it or...how my dad use to tell me, " a low blood platelet disorder." It wasn't until this last 5 years that I've had more information on ITP. I think I go into remission once in a while but have always had hematoma's on my legs pretty much all year around and extreme fatigue. I hope to someday be able to afford treatment.
My husband has an ITP story after being diagnosed at age 2, spleen removal, heavy steroids, remission at age 17, relapse at age 50, hematologist with many treatments some worked but eventually kept dipping to 3,4,5K, trying to live with medications that made him so miserable, we traveled to seek out the best Drs, St. Louis, the Oklahoma City, with no answeres, I have always been a huge advocate of nutrition as 1st line of defence, and healthy eating, so we began experiminting with building gut health and a gluten free diet. This has helped him to lead a more normal life at age 70, will keep doing what hes doing and keep looking for new ideas! God bless everyone out there with this disease, its so hard on all family members and not much hope from mainstream medical, keep looking, searching and sharing!
thanks for sharing. I was diagnosed last month and it's been a rollercoaster, just started doptelet. last count was 2300
Im taking doptelet 20 mg 2 times a week for almost 2 years and my platelets is up and down i went several times to hospital ntransfused IVIG n platelets infusion
Very inspiring story
Thank you for this. I was diagnosed in 1979 and was on steroids for a couple of years, but kept relapsing. Eventually my count dropped to 2,000 and I was told that I had to have a splenectomy which I was pleased about, so much so that I was singing in the operating theatre (for a few secs).
My recovery was great and my platelets went to 300,000 and they have stayed that way for the last 35 yrs. BUT, I started having bouts of pneumonia and then was diagnosed with a serious lung disease leading to the removal of an entire lobe in my lung. Then about 10ths after that I developed a neurological/immune disease which has left me mostly housebound. I cannot say that these 2 further diseases are caused by the splenectomy, however my Drs all have their suspicions. The Dr never explained about the downside of a splenectomy, however I guess that I had no choice way back then. I wish you the best of health!
r u alive still
I have this. It comes and goes. I've learned to live with it. Im 60 and refuse to see the doctor. I suffer from the steroids they kept giving me and they want me to take more. Not a chance..oh well..my itp is idiopathic..they don't have a clue why i have it..
My platelets are at 1.8 million, i must be watching too many blood video's to end up here 😅.
My blood was tested and fine 2 weeks before my first mRNA vaccine. Within 4 months of the first and only shot I regrettably submitted to I had low platelets that have never returned to normal. I’m currently at 70,000 and await a referral to a platelet specialist clinic because my Hematologist is too busy with the increase in blood cancer patients. My country is highly vaccinated and currently has a 17 % increase in all cause mortality excess deaths as of December 2023. Very few are Covid related. Make your own conclusions.