Save Julia's Vision

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Julia Matsumoto

 

Julia's Orange County Register Article

 

 

   If you look at the picture of Julia and her family from August of 2010 (black and white above), you will see a happy, healthy, loving family.  Life would take a drastic turn just 2 months later.  Julia and her husband were both working to support their family of two young children.  Julia awoke on the morning of October 22, 2010, with a severe headache over her eyes.  Her life, and those of her family, would never be the same. 

 

   Within days, her vision started to darken and blur.  Panicked, she sought out help from several doctors including USC – Doheny Eye Center who incorrectly diagnosed her problem.  She continued to suffer from the debilitating headaches, and she continued to lose vision.  In desperation, when her vision was nearly gone, she came to us and we were able to finally diagnose her problem.  Unfortunately, we discovered that she had an autoimmune disorder, where her body was attacking the nerves she was seeing with (Autoimmune Optic Neuritis).  No specific cause was ever found. 

 

   This disease mandates high levels of steroids to try and stop the loss of vision by controlling the body’s immune system.  These drugs are very dangerous to use, however.  She was immediately started on IV steroids, with a dramatic improvement in the vision.  You can see from the tests (Visual Fields) that before the steroids she was almost completely blind.  After the first round of steroids, she had recovered a fair amount of her vision.  She was switched to high doses of oral steroids to try and keep the improvement she had recovered.  But steroids have significant side effects at this level, and she was already having trouble with intense pain in her joints, a tremendous weight gain, problems sleeping and thinking clearly, stomach ulcers, and additional head pain.  She was having trouble moving around.  She still could not see well enough to drive. 

 

   Her mother was her support system and drove her to all her appointments and treatment sessions.  Then her mother had a major stroke and lost the ability to move her left side, and she could not talk.  She has been hospitalized ever since.  Julia had to fight on alone.  But Julia could not work anymore, and then lost her job.  She lost her insurance too.  She was switched to her husband’s insurance to continue her treatment.

 

   After 9 months of steroids, her doctors felt she was going to die of the side effects of the steroids if nothing else was done.  In addition, she was continuing to slowly lose vision despite the steroids.  Imuran, a powerful anti-inflammatory was added to the steroids, but did not seem to stem the progressive loss of vision.

   She was then started on IVIG, a powerful immune modulator that costs $10,000 per treatment, and had to be given for 5 days of every month.  This expensive treatment seemed to be helping, and she was starting to come off the steroids when her husband lost his job, and lost his insurance.  Without insurance coverage, and without jobs, the family could not afford the IVIG anymore, and the treatments were abandoned. 

  

   The family has been struggling to pay for the steroids that have allowed her to barely hold on to her vision.  The side effects have progressed.  The color picture to the right, shows Julia and her family in September of 2011.  You can see what the steroids have done to her.  She is still smiling, and is trying to be happy thru the pain and visible changes in her body and the loss of vision.

 

   Without any help, Julia faced her family and told them that she has accepted that she will go blind, and that she needs to go off the steroids to save her life.  In the midst of the tears of Julia and her husband, her young son gave his understanding of the situation by asking his mother: "But you’ll still be able to make us breakfast, won’t you mom?".

 

   This has been Julia’s battle.  Julia Matsumoto is one of the most spirited, enthusiastic, and energizing people you will ever meet.  She has met every challenge, but she understands that it is a losing battle.  She has accepted her coming blindness with grace and strength.

 

   Just as all hope was abandoned, however, reports started coming in about new stem cell treatments that have been effective for some autoimmune diseases.  You will find some stories on this website. Though the treatment of Autoimmune Optic Neuritis has never been attempted, there is some hope.  The stem cells would be taken from Julia herself, concentrated in serum, and then reinjected into her blood stream.  The hope is that her reintroduced stem cells will reset the immune system so that it stops attacking her nerves. 

 

   The treatments are done within an FDA protocol.  The problem is the cost.  The California Stem Cell Treatment Center based in southern California charges $10,000 per treatment.  They estimate that three or four treatments may be needed to control this disease.  The Center and Dr. Elliot Lander have been very helpful and have agreed to give Julia a 50% discount.  That is still $5,000 per treatment.  Though stem cells have never been used to treat this disease, at least there is hope. 

 

   Julia has had to be convinced that this is worth the effort.  She doesn’t know if she can let hope back in, especially with her family, and then have that hope once again dashed by failure.  She doesn’t know if she can deal with the loss again.  But she is courageous and a fighter, and with our help, I know she can do it.  This is where you can help. 

 

   We really need your help to allow her to have this potential vision-saving treatment.  If this works, she will be able to stop the steroids that are killing her.  This could change her life again, and put her back with her family and allow her to care for her husband and children.  She ends ever day now praying that she can see her children just one more time before she loses everything.

 

   We want to be able to add one more picture to this webpage.  We want a picture of Julia and her family when she is healthy again and can see again.  Help us put this picture on this page.

 

   Anything and any amount you can donate will go directly to help pay for Julia to have this stem cell treatment.  You will be saving a family.  Please give what you can to help.

Julia Matsumoto Fund
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Julia Matsumoto Fund

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Please download Julia's Pledge Form below, make checks payable to "Save Julia's Vision" and mail to:


Save Julia's Vision

c/o Dr. Lawrence Geisse MD

PO Box 250

Los Alamitos, CA 90720