Ruth Swain, the main character in History of the Rain by Niall Williams, has a debilitating blood disorder, though specific details are not mentioned in the blurb.
From the publisher:
Bedbound in her attic room beneath the falling rain, in the margin between this world and the next, Plain Ruth Swain is in search of her father. To find him, enfolded in the mystery of ancestors, Ruthie must first trace the jutting jaw lines, narrow faces and gleamy skin of the Swains from the restless Reverend Swain, her great-grandfather, to grandfather Abraham, to her father, Virgil – via pole-vaulting, leaping salmon, poetry and the three thousand, nine hundred and fifty eight books piled high beneath the two skylights in her room, beneath the rain.
UK publisher: Bloomsbury (April 2014)
Author represented by: Caroline Michel of Peters, Fraser & Dunlop