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Advocating to Kaiser Healthcare

Posted , 5 users are following.

mara08428
mara08428

My daughter has been suffering from HS for over two years. Dermatologist at Kaiser gave very conflicting treatment plan.  I am worried for her. She is young. I have read that surgery has over 90% successful with healthy lifestyle. I also read that do the surgery sooner than later. I am going in again tomorrow w my daughter. Please pray for her.

0 likes, 20 replies

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  • catherine_72627
    catherine_72627 mara08428

    Posted

    Im really sad for your daughter since my suffering started at 13. At least she got a dermato which i didnt have . I might get some hate for this but i recently found something that works after 1 year of antibiotics that gave nothing and reducing my diet to only greens which gave nothing either. I didnt had a flare up in months. I now eat like my bf since 6 weeks and my scars are healing , even my tunnels and the dark black grey scars are getting light again. I use noxzema to wash , the original one. I use a thick layer on my armpits, groin and tighs and my lower belly where it was spreading. I scrub it a bit and clean it with dexidin4 which is like hibiclens 4% i believe. If i have had an open cyst or a collection of whitehead stuff i used dexidin alcohol on it. I then dry my skin and at first i was using a thin layer of Ketoderm , its an anti fungus cream. Some of my cysts where smelling bad and my doc gave me this cream. I wait until it dries and i had a thick layer of Benzogel5, its a simple acne cream. The first week i had an explosion of cysts, even some that were very deep and that i thought were just bumps... I used to put benzogel twice at first. All the cyst healed rapidly and now im working on getting all the whiteheads out! I feel good in my skin again. Oh i started my journey to recovery by using baking soda to lightly scrub, idk if its important.. Some might say it will come back and it was because i had changed my diet but i started introducing different things 3 months ago and i eat normal since 6 weeks and i have no signs of flare ups. Its my story , it might now work as well for someone else but i would say to never give up on trying a new treatment. And i would add that surgery is definitive. If its the last option or the best option. Good luck and dont lose hope i struggled for a decade 
    • mara08428
      mara08428 catherine_72627

      Posted

      Thank you for sharing. I finally broke down and wept in private. I am praying for my daughter and all of you.

      M

    • catherine_72627
      catherine_72627 mara08428

      Posted

      Ill pray for her too , thank you! Honestly its such a hard disease. Im glad your daughter found a doctor that knows what it was. I battled against it on my own for a decade. I even thought i had some kind of herpes at the age of 14 after i kissed a boy lol i been ashamed a long time. My doctor wouldnt take me seriously and give me the paper to see a dermatologist, she always told me to put warm cloth over it and that it would go away. When i found out it was a disease she said i watched too much internet.
    • mara08428
      mara08428 catherine_72627

      Posted

      I am so sorry you had to go through that. It is scary for anyone let alone young ones. My daughter feared that God had punished her and why would God punish a good person.  I have been reading a lot. There are lot of good news. I wonder if I can send links or pdf here.  

      Let us all remember that just because the doctors say there is no cure - what they mean is they do not know of one or a cure does not exist now. It may tomorrow.  The dermatologist we say this week was reading up medical journals published just like I was doing.  Let us pray, there is power in number.  God bless 

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