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    World Moyamoya Day


    Today May 6th is World Moyamoya Day. A day set aside to bring awareness to a very rare disease. Kathleen was diagnosed at almost 5 years old. In the span of a few months suffered several strokes, had 2 brain surgeries, and since then has worked very hard to regain what the disease took from her. As you can see in this picture of her and the surgeon who saved her life, it didn't take her smile or her spirit.
    ***********************************************
    What is moyamoya?
    Moyamoya is a rare condition in which the blood vessels (internal carotid arteries) that supply blood to the brain become narrowed. This limits the flow of blood to the brain, and puts them at risk for stroke.
    The brain tries to make up for reduced blood flow by growing new blood vessels, called collaterals. While these blood vessels can temporarily help increase blood supply, they eventually stop working. The name “moyamoya,” which means “puff of smoke” in Japanese, refers to the wispy, smoke-like appearance of these new blood vessels on an x-ray.
    Moyamoya is a progressive condition, meaning that it gets worse over time, so children need treatment to reduce their risk of stroke.
    Some children with moyamoya also have another medical condition, such as:
    sickle cell disease
    Down syndrome
    neurofibromatosis (NF)
    congenital heart disease*******************
    Only registered and activated users can see links., Click Here To Register...


    2Lacey Hartman Lautenschlager and Robert Izzo
    1 Share

    #2
    Lovely photo of the 2 of them. I didn't know there was a Moyamoya awareness day. Moyamoya day falls within Stroke Awareness Month which feels appropriate. I also did not know the disease kept progressing.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

    Comment


      #3
      ((((((Mary Grace and Kathleen)))))) ~

      Thank you so much for sharing this photo and bringing awareness to Moyamoya.

      God bless the surgeon, who saved Kathleen's life, and God bless you, your husband, children, family and friends, who have given Kathleen such a wonderful life.

      Kathleen's smile tells the whole story. She is Joy!

      Love & Light,

      ❤️❤️❤️❤️

      *Virtual Hugs Are Germ-Free!


      THANKS!
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        Rose and Funnylegs, Thanks for reading this, and thank you for the kind words! It is a progressive disease with no cure. As far as Kathleen the carotid arteries in her brain are gone. The surgery brought some new blood flow that comes from temporal veins that have been attached to her brain. I try to always educate anytime I can because you never know when someone can use the information to save a life. Funny because the day before world moyamoya day I was doing an intake with a nurse for Kathleen to have a procedure on Monday. We were going through her health history and when we got to the moyamoya she said "hmmm I'll have to look that one up" So I proceeded to educate her on it. She was very happy to learn all about it.
        And thank you Rose, Yes Kathleen is a JOY!!! LOL
        Mary Grace

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          #5
          ((((((Mary Grace)))))) ~

          What kind of procedure is Kathleen having on Monday? Sending lots of prayers that all goes well.

          Kathleen is joy and love and hope personified.

          Holding you all close and sending healing, positive energy.

          Love & Light,

          ❤️❤️❤️❤️

          Rose

          *Virtual Hugs Are Germ-Free!


          THANKS!
          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

          Comment


            #6
            Thank you Rose! We have been getting small amounts of blood through Kathleen’s catheter. It’s been getting to be more over the past couple months. Urine cultures were fine and we tried new catheters. Last week she voided a lot of blood a couple of times. They’re doing a scope of her appendicovesicostomy on Monday. She’s had it for about 8 years so it may need a revision.
            Mary Grace

            Comment


              #7
              ((((((Mary Grace & Kathleen)))))) ~

              How did the procedure go, and do you have results yet? You've been in my prayers, and I'm sending you positive, healing energy.

              Thinking of you ~

              Love & Light,

              ❤️❤️❤️❤️

              Rose

              *Virtual Hugs Are Germ-Free!


              THANKS!
              Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

              Comment


                #8
                Thanks for asking Rose. Kathleen did well with the procedure. they didn't find anything serious. No growths or cancer. What they did find is that her bladder is more vascular than the typical bladder. Lots of small vessels throughout. Reminds me of the vessels in her brain from the moyamoya, small and lots of delicate vessels. Thinking is that maybe the catheter is catching on these vessels. We're trying a new design. So far it still creates some blood but we'll see how it goes.
                Mary Grace

                Comment


                  #9
                  ((((((Mary Grace & Kathleen)))))) ~

                  Thankful that nothing serious was discovered. I'm sending prayers that the new catheter will work better. Please keep us updated.

                  Love & Light,

                  ❤️❤️❤️❤️

                  Rose

                  *Virtual Hugs Are Germ-Free!


                  THANKS!
                  Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                  Comment


                    #10
                    Thank you Rose, I've been using the new catheter for about a week and it doesn't seem to have made a difference. So we're just monitoring it for now. It may be that any catheter may catch on a vessel and cause it to bleed. Hopefully I won't get the large amount she had peed out a couple of times that was a bit frightening.
                    On a side note my older daughter has been dealing with hyperthyroid. It's been awful. Her symptoms have been so severe I've had her staying her with us some days. She has tremors, exhaustion , high heart rate, sore muscles, very itchy skin (no rash) depression,and very high anxiety. She hates all the thoughts of how to fix it, methimazol, radioactive iodine or removal of the thyroid. She has taken the methimazol for about a week but over the past few days she could hardly walk her legs hurt so much so we're not sure if it's the meds or the thyroid. I honestly think she may want to try and fix it with diet and better life habits.She used to do crossfit workouts and run but hasn't been able to do anything. She's going to check in with the dr. today and see what she can do.
                    Stay well rose!
                    Mary Grace

                    Comment


                      #11
                      ((((((Mary Grace)))))) ~

                      You have your hands full right now with both of your daughters' medical issues. I'm so sorry.

                      What options do you have for Kathleen, if all the catheters irritate and cause bleeding? Do the catheters come in one size or a variety of sizes? We had to experiment with Jon's indwelling cath, upsizing it a couple of times to get the best fit to prevent leakage. I hope that Kathleen's doctor will have other suggestions, if the bleeding continues.

                      Your older daughter must be in agony. Was hyperthyroid a sudden onset for her, or has she been contending with it for awhile? I hope for her that her conversation with her doctor today resulted in something to help her.

                      Sending lots of prayers, and healing, positive energy. I know you must be quite worried and exhausted. Remember to take care of yourself.

                      Love & Light,

                      ❤️❤️❤️❤️

                      Rose

                      *Virtual Hugs Are Germ-Free!


                      THANKS!
                      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                      Comment

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