ITP and MDS

[Kerpaka]

I was diagnosed with ITP (platelets 32) and a very low level MDS because my red blood cells are a little low. This diagnosis came after a BMB. Guess I hit the jackpot with 2 rare diseases.

Wondering if anybody else has the same diagnosis and what treatment you are receiving.

Thanks.

[1985123]

I had autoimmune hemolytic anemia three years ago, my red blood count was 4- it was an isolated incident, treated with hospital stay infusions and steroid. Then this summer my immune system went after my platelets, they got down to 5000, and this has been more chronic, requiring IViG once and steroids twice in 6 months. I’ve been seeing better recovery (up to 120,000s) after beginning treatments with a functional medicine homeopathic doctor and receiving healing prayer.

The reality is you/we don’t actually have two separate diseases, we have an autoimmune condition, so if our immune system is misdirected it can go after more than one thing in our bodies. For us - it’s our blood (I’ve had vitiligo in my skin for decades too) I’ll be honest- the low red blood cells I experienced were scarier and more physically taxing and immediately dangerous than the platelets so I understand the fear. But the root cause of the hemolytic anemia and the ITP are the same- If you can find a doctor who will deal with why your body is having an autoimmune reaction, (a combination of genetics and toxins in your system, etc ) then they can develop a treatment plan to help you begin to heal.

Prayers and wishing you hope and peace and answers.

[lillaa in reply to 1985123]

Have you been told that what you have is called Evans Syndrome (both itp and hemolytic anemia, not necessarily at the same time)?

[1985123 in reply to lillaa]

I asked, but two different hematologists told me they usually see white blood cell issues with that diagnosis- and they imducated that Evans Syndrome was one of exclusion and wouldn’t change the treatment plans anyway. But I did wonder!