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Avatar universal

Doctors pincushion

Hell, I'm a 16 year old girl and I have a unknown autoimmune problem that I've been dealing with for the past two years and the doctors don't know exactly what it is or how to treat it. This autoimmune problem I have is really hard to deal with because I'm always in and out of emergency rooms and hospitals, I can no longer do the things I can enjoy like hanging out with friends, or going places without my mom near by or other family members. I can't go to school anymore because I was missing to much school so now I'm cyber schooled.
And I just want to know how do I deal with this and still stay positive?
8 Responses
Avatar universal
Dear Madison:
My daughter was diagnosed with an immune deficiency at 16. Have you been tested for various immune problems? For more information about immune disorders go to www.primaryimmune.org  The people at the IDF (Immune Deficiency Foundation) were easy to talk to and on their web site there is info in what kind of testing the docs can run to affirm or deny any of the immune problems people can have. Loads of other info too!
They can also suggest immunologists in your area that are familiar with
immune deficiencies.

I would also suggest that you have your D3 levels checked. Your levels should be between 50 and 70 ml for "optimal" health. When my daughter was checked she had a level of 9. She is feeling much better and healthier since she started( on the doc.'s orders) to take 6.000 IU of D3 a day. It takes time to build up in the body, and you should get it checked 2 times a year. D3 is cheap and easy to buy at Costco, Walmart, Walgreens etc. Well worth taking D3 while you try to find out the answers to why you are sick all the time. Lots more info about D at www.vitamincouncil.org

I hope your parents are helping you with finding answers, I know it just really stinks to be a teenager and not be able to do the things all the other kids are doing. Have your parents read this post and look at these 2 web sites with you. When you go to the doc's office have both you and your Mom insist that the doc keeps looking for answers or refers you to an immune specialist. The immune specialist can test you for both auto-immune and immune disorders.

I hope you find answers soon, and your health improves!

All the best
Avatar universal
I'm already seeing a immunologist and they have an idea that it could be hereditary angioedema type three. So I have to go see a specialist that is actually running a study on hae. And the only medication that is approved by the fda I am to young to take. And the only medication that seems to work is a androgen, and being put on a androgen really isn't good especially that I'm a girl and it's really really embarrassing because I have had a few side effects. And it's not easy because my doctor can't take me off of it because I end up being hospitalized for a while and it gets lonely.
Avatar universal
I am sorry to say that I don't know anything about hae. I would think that you could still take the vitamin D3. Discuss this with your parents and doc's. It is worth getting the doc to add a D3 test on to your next blood work, but you could just start the D3 now at 5,000 IU daily if your parents agree with this idea.

Also the IDF has specific teen support groups on line and they meet in certain cities around the U.S. and maybe you could participate with them. My daughter found people she could relate to in that group.  They also have parent groups and that really helped me too! If it is not hae then the IDF does have docs who can give advise or share more information with your immunologist if he is open to that.

I so hope that you have a Merry Christmas, and 2014 brings you the answers you need to get your heath under control.  Don't give up there are good things in store for you. Be determined and patient.

Wishing you all the best,
Avatar universal
After some thinking, I remembered that when my daughter and I went to an IDF conference we were in a session on Compliment Deficiencies. In the Compliment Deficiencies session they talked about HAE. I also took the liberty of calling the IDF today at 1-800-296-4433 and talked to Nicole their patient advocate. She asked that I give you her name and number and that when you call (please include your Mom or who ever usually goes with you to the doc) she can help you find the information you need. She will be in the office this Friday, and next Mon. and Tue. off New Years then back to normal times.

Good news! The IDF considers HAE an immune deficiency. That means that the foundation at www.primaryimmune.org has just tons of info there to help you and your family. On their home page look under Compliment Deficiencies for info about HAE.

  They have the teen group online and teen meetings around the U.S. They also have parent meetings, and a school specialist who can help you with your legal rights under the education system. It costs you nothing to be a member of the IDF. You can join the online teen community for free too. A lot of the teens are also home schooled or home bound, so they know how you feel and have empathy for what you and your family is going through. You can make friends with them and Skype.

They also have a consulting immunologist who can talk to your immunologist to share lots more info and the most recent treatments.

To summarize, the IDF started out as a support group, but it is so much more now. The IDF has made a huge difference in our lives, I strongly encourage you to call with your Mom/Dad and talk to them. This may be the help you need to get your health back. My daughter is doing so much better. She enjoys being out of the house and living as normal as possible. That is my Christmas wish for you. Please, share this post with your parents and follow up with the IDF, I think you will be happy you did.

Let me know how you are doing :)
Avatar universal
Thank you so much. I will keep you posted
Avatar universal
Hey Madison:

I know Dec. is a crazy time. Have you seen the specialist who knows more about HAE? If so, did that help you? Were you able to contact Nicole at the IDF about a teen support group?


Avatar universal
I haven't because where I live it isn't good driving driving a while weather. And I didn't only because I don't really know how to talk to my mom.about it because we don't really talk
Avatar universal
With this horrible weather, I understand not getting out and about!
I don't know if this would help, but if you go to the IDF web-site at primaryimmune.org you can order a lot of their publications for free. They can mail them to you. Maybe you could show them to your Mom and then talk to her.

To share the experience of my family, it was so great to talk to other parents in this same fix. My daughter loved talking to other teens with immune deficiencies in person and on line. Is there someone in your family who can talk with you and help you find answers?

From my point of view, I felt guilty, angry, frustrated, and heartbroken when trying to deal with why my daughter was so sick all the time. It was just so hard to find the energy and time to explain again and again to the school, the docs and even my family that my daughter was chronically sick and try to help them understand. Many of those people never did and still don't. I had to learn how to stand up for my daughter against those unbelievers and keep at it until we had a diagnosis at 16.
My daughter also had to learn how to stand up for herself in different situations, it is tough! We finally saw a light at the end of the tunnel.

If you have HAE then you have a disability under the law. The law that applies is the Americans with Disability Act. There is also a education law called IDEA. The Individual with Disability Education Act. The public schools can not discriminate against you. Neither can other parts of society.
It is too bad that people like us have to fight so hard to be treated well. We have rights. I can offer my sympathy and hope things get better for you.

One of the quotes, we heard at an IDF meeting was this:

"illness doesn't ask, it demands!"

We found this to be true.
Madison, I can only hope and wish for the best for you. Let me know how things are going.

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