Cosa significa vivere con l'ITP: la storia di Joan
Quando Joan ha saputo di essere affetta da trombocitopenia immunitaria, un anno e mezzo fa, era scettica sulla diagnosi. Il problema è iniziato con emorragie nasali che non passavano e molti lividi. Tuttavia, Joan ha avuto una lunga carriera come infermiera, quindi sapeva quali dovrebbero essere le conte piastriniche e che le sue erano pericolosamente basse, dato che aveva anche altre 4 malattie autoimmuni. Joan capì che si trattava del risultato del sistema immunitario che "accendeva" le piastrine e allo stesso tempo le distruggeva.
Joan also realized quickly that she wasn’t having the relationship she wanted with her hematologist. The first sign was when she called the office after her blood work revealed a dangerously low platelet count below 8,000, and the doctor didn’t get back to her for three days. She looked for another doctor immediately and was able to find another hematologist at the same hospital. As a result, Joan advises you to act in a similar manner, if you are not satisfied with your relationship with your current doctor. Moreover, she recommends finding a doctor who can communicate, is compassionate and understanding, and speaks to science.
What Worries Joan While Living with ITP
‘Mostly about Covid-19’, she said. Joan has to go to the hospital every week for an injection of her current medication and therefore worries about exposure to the virus. On the other hand, going weekly for injections relieves her anxiety about whether her platelets are falling dangerously low. In general, she tries not to worry too much and enjoys life. She doesn’t let her ITP stop her from going on the vacation trips she loves, or keep her from spending time with her children and grandchildren.
Nevertheless, this means she has to be cautious and take care of herself. Joan recognizes the potential triggers for her platelets to drop. One of the main causes is stress, which may be higher during the holiday season due to all the preparations, events, and traveling.
Joan’s advice for Living with ITP
Do a lot of reading! Learn as much as you can, as learning helps you feel better. Here is a list of some resources that are helpful to her:
Gruppi Facebook sulla ITP;
Platelet Disorder Support Association (PDSA) - un'organizzazione di pazienti affetti da ITP che offre ottime informazioni e risorse;
Gli studi clinici sui siti web della FDA, perché è sempre interessata alla possibilità di scoprire qualcosa di nuovo che possa aiutare lei o qualcun altro in futuro;
Centri per il controllo e la prevenzione delle malattie (CDC)
Non andare a letto, continuare a vivere la tua vita
Contate le vostre benedizioni e andate avanti
Non c'è un motivo per cui le piastrine salgano e scendano e bisogna seguire il flusso.
Find a hematologist you can trust.
