Henoch Schonlein Purpura IGA Vasculitis Adult - Others out there?

Posted by junetooth @junetooth, Sep 6, 2022

Interested in connecting with adults with this diagnosis. Specifically, those with kidney involvement, skin lesions and/or gi folding interseption (sp). Thank you.

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hspwarrior | @hspwarrior | Mar 15, 2023

Is there anyone here diagnosed with Henoch-Schonlein purpura?

Becky, Volunteer Mentor | @becsbuddy | Mar 15, 2023

In reply to @hspwarrior "Is there anyone here diagnosed with Henoch-Schonlein purpura?" + (show)

@hspwarrior I’m going to ask a moderator to move your question about Henoch-Schonlein purpura to one of the on-going discussion so that you can meet other members.
Were you recently diagnosed with Henoch-Schonlein?

junetooth | @junetooth | Mar 16, 2023

In reply to @hspwarrior "Is there anyone here diagnosed with Henoch-Schonlein purpura?" + (show)

Yes. There are I believe 4 of us?
One older gentleman,
Mom of a teen,
a relative of newly diagnosed,
Me.
Please earlier posters please check in so we can connect with @hspwarrior.

Where are you in your journey?

How can we share and support each other?

hspwarrior | @hspwarrior | Mar 16, 2023

In reply to @becsbuddy "@hspwarrior I’m going to ask a moderator to move your question about Henoch-Schonlein purpura to one..." + (show)

Thank you, Ms. Becky. 🙂 Diagnosed years ago and never met anyone with the same rare condition so I am searching if there are others out there.

hspwarrior | @hspwarrior | Mar 16, 2023

In reply to @junetooth "Yes. There are I believe 4 of us? One older gentleman, Mom of a teen, a..." + (show)

Hello, Junetooth. I'm here, hanging on. Thank you for connecting.

junetooth | @junetooth | Mar 16, 2023

Do you want to compare notes and treatment t strategies?
If so:
What symptoms are you experiencing? Skin lesions? Kidney involvement?
What medication protocols are you taking?
How long have you had your diagnosis?
There are tips and sone emerging treatments. Open to sharing options.

saraga | @saraga | Mar 28, 2023

In reply to @junetooth "Yes. There are I believe 4 of us? One older gentleman, Mom of a teen, a..." + (show)

Hi,
I’m a family member with person sick for 4 months. How are you coping and is there an end to it? How can we connect?
Best wishes

Becky, Volunteer Mentor | @becsbuddy | Mar 28, 2023

In reply to @saraga "Hi, I’m a family member with person sick for 4 months. How are you coping and..." + (show)

@saraga so, your family member has been sick for about 3 months. Have they seen a rheumatologist? Call a large medical center or university hospital and you should be able to find a doctor if you haven’t already.
What is the biggest problem you are dealing with?

saraga | @saraga | Apr 19, 2023

Hi thank you for your answer.
Tiredness mostly, and cough.
The rest is under control with meds.
Starting to think it could be something else too?
How are you?
Best wishes

Becky, Volunteer Mentor | @becsbuddy | Apr 19, 2023

In reply to @saraga "Hi thank you for your answer. Tiredness mostly, and cough. The rest is under control with..." + (show)

@saraga it’s wonderful to hear that most of your symptoms are under control! Fatigue is a real problem for those with autoimmune diseases. If I don’t lie down during the day, I’m a real wreck!
Why are you thinking that it could be something else also? You were writing about a family member, correct? What other symptoms are they displaying?
What doctor specialist is your family member seeing?

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